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HSG 2022

The 29th Annual Meeting of the Huntington Study Group

November 3 – November 5, 2021

HSG 2022, the annual meeting of the Huntington Study Group is going back to an in-person event in Tampa, Florida on November 4-6, 2021 at the Grand Hyatt Tampa Bay. The popular Research Round Up panel discussion on current clinical trials and our brand new HSG EXPO will kick things off Thursday afternoon and evening. Plenary, scientific, and research sessions will take place on Friday. Our annual Family Day Symposium took place on Saturday.



ONLINE REGISTRATION

Registration is required to attend. Online registration is NOT currently open, but will be opening soon.

Rates

– Family Day Only – Saturday (FREE!)
This package provides access to Saturday content only.

– HSG Credentialed Investigator $100.00 (USD)
This Package provides access to the entire event.

– Advocacy Organization or Non-Profit $150.00 (USD)
This Package provides access to the entire event.

– General registrant – all 3 days $150.00 (USD)
This Package provides access to the entire event.

-Industry/Pharma $500.00 (USD)
This Package provides access to the entire event.

– Students / Residents / Fellows (FREE)
Proof of current status required. Please email info@hsglimited.org to receive the fully discounted rate. This Package provides access to the entire event.

AGENDA & SCHEDULE*

HSG 2022 Agenda

Thursday, November 3, 2022

All times listed are for U.S. Eastern Standard Time

  • Stay tuned for updated agenda

Friday, November 4, 2022

All times listed are for U.S. Eastern Standard Time

  • Stay tuned for updated agenda

Saturday, November 5, 2022

All times listed are for U.S. Eastern Standard Time

  • Stay tuned for updated agenda

*Agenda, speakers, and times are subject to change. Check back here for updates and posted agenda as we get closer to the event.


ABSTRACT POSTER SUBMISSION & VIRTUAL POSTER HALL

*NEW THIS YEAR!* Submitted abstracts chosen by the HSG Publications Committee will be published in the Journal of Huntington’s Disease.

Abstracts must be submitted in accordance with the Journal of Huntington’s Disease Manuscript Submission & Author Instructions Policy. In particular, submitters are asked to adhere to the following. Failure to adhere to the guidelines by result in rejection of your submission:

The abstract for research papers should follow the “structured abstract” format:

BACKGROUND:
OBJECTIVE:
METHODS:
RESULTS:
CONCLUSIONS:

The abstract should try to be no longer than 250 words.

Submitters are required to submit the edited abstract in MS Word format (.DOC or .DOCX). A detailed summary of the abstract or full plain text version is also required to be entered or pasted into the appropriate submission portal field.

Authors are requested to use the Vancouver citation style. Place citations as numbers in square brackets in the text. All publications cited in the text should be presented in a list of references at the end of the manuscript. List the references in the order in which they appear in the text. Only articles published or accepted for publication should be listed in the reference list. We discourage textual references to unpublished and unavailable data. With permission, the author can reference a personal communication with name in the discussion section. If an article has a DOI, this should be provided after the page number details. The number is added after the letters ‘doi’. Manuscripts will not be considered if they do not conform to the Vancouver citation guidelines.

Please DO NOT INCLUDE tables, figures, supplementary material, or graphics in your abstract submission. Tables, figures, supplementary materials, and additional graphics may be included in your poster and virtual poster booth configuration.

Attendees will experience an in-person poster event that the HSG Annual Meeting has come to be known for. Abstract posters will be displayed in our Poster Pavilion. The HSG will also select up to two abstracts to deliver a Platform Presentation on the research during the HSG 2022 main agenda on Friday, November 4, 2022.

KEY ABSTRACT DATES FOR HSG 2022:

– Regular Abstract Submission Closes: July 31, 2022
– Regular Abstract Selection Notification: August 31, 2022
– Late-breaking Abstract Submission: September 1-10, 2022*

*Late-Breaking Abstract Submission period occurs after key print deadlines and will only be eligible to present at a poster booth. Late-breaking abstracts are not included in the online publication of HSG 2022 Abstracts in the Journal of Huntington’s Disease.

SPONSORSHIP & EXHIBITOR OPPORTUNITIES

The Huntington Study Group has updated packages for organizations interested in sponsoring or exhibiting at the HSG 2022 ANNUAL MEETING, including an opening night Expo! Please contact Kristin Strazdins to request the HSG 2022 Sponsor/Exhibitor Packet and book your organization’s presence at this premier annual event!

Contact: Kristin Strazdins
Email: kristin@hsglimited.org
Phone (toll-free): 1-800-487-7671

HSG 2022 ANNUAL MEETING SPONSORS

Return to Our Annual Meeting overview page

Protected: Clinical Research Services

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myHDstory™

WHAT IS myHDstory™?

myHDstory™ is an online research project sponsored by the Huntington Study Group (HSG). It will help us to understand how Huntington disease (HD) affects patients, care partners, and those at genetic risk for HD. myHDstory™ was created as a research study to enable People Affected by Huntington’s Disease (PAHD) to report their symptoms and voice their priorities.

The information we collect will help create:

  • A profile of patient-reported experiences of what it is like living with HD
  • Outcomes for clinical trials based on symptoms that are important to PAHD,
  • A resource to enable PAHD to easily participate in new research.
  • A de-identified, shared database for researchers to help them understand what PAHD feel and experience,
  • Publication of the results of the research findings that will be shared with participants, the broader HD community, and researchers around the world.

AVAILABLE RESEARCH STUDIES THROUGH myHDstory™?

Below are the studies being conducted through the myHDstory™ online platform and information about whether the study is enrolling participants. To learn more about each study or to get a link to enroll, expand the sections by clicking the indicator next to each section header title.

A critical first step for myHDstory™ is the Pilot Study Making HD Voices Heard. The Pilot Study will ask people living with HD to report what experience and how they function. The Pilot Study is sponsored by the Huntington Study Group (HSG), in collaboration with technology companies Grey Matter Technologies, INC and Neurotargeting, LLC.

  • Our goal with this Pilot Study is to learn if replying using your own words and your own online devices is useful in understanding the problems that HD patients face.
  • This Pilot Study is being conducted to help improve understanding of HD; for example, how patients experience their symptoms, and how the disease affects overall health and personal well-being.
  • For those HD-diagnosed research participants who have undergone genetic testing for HD, we are also interested in learning test results what the genetic testing experience was like for you.
  • At the conclusion of the Pilot Study, participants can share their experience and opinions about the Pilot Study in a satisfaction survey.
  • Participation in the Pilot Study is voluntary and at no cost.
  • No medical treatments or medical advice will be provided as part of this study.
  • We will use this study to better plan the next studies of the myHDstory™ project.

Eligible participants must meet the following criteria:

  • Adults age 18 years and older
  • Willing and able to provide informed consent electronically.
  • Individuals answering as a participant must self-report they have been diagnosed with HD by a doctor.
  • Ability to answer online questions or direct someone else to enter answers for them.
  • Ability to ambulate independently and take care of some of his or her personal needs.
  • Ability to read and understand English.
  • Willing to create a unique identifier based on personal demographic information.
  • Residing in the United States or its territories
  • Owning or having access to an electronic device (laptop, smartphone, or computer) and secure internet connectivity

Someone who does not meet all these requirements cannot participate in the Pilot Study, but can register to be contacted for future studies in which they might choose to participate.

Participants are encouraged to complete the study in one session, which will take about 2 hours, but may also save their progress and complete participation at another time. The study will be open for enrollment over a period of 3 months. During that time, we plan to enroll between 200-500 participants who have been diagnosed with HD.

If you qualify and agree to take part in this study, you will be asked to complete the following tasks:

  1. Connect to the myHDstory™ online platform using your own compatible smartphones, laptops, desktops, or tablets.
  2. Choose if you want to complete this one-time study using an app or web-based browser access on your computer device.

If you have technical problems with the online study platform, you can contact the study by completing and submitting the form available from the “HELP” link on the menu banner in the app.

You may report unwelcome or inappropriate emails to the sponsor, Huntington Study Group (HSG), via the email info@myHDstory.org.

If you are interested and believe you qualify to participate, you may click the button below to begin the enrollment process:

If you have additional questions about participating in the Pilot Study, please contact the HSG.

Email: info@myhdstory.org
Phone: 800-487-7671


Special Thanks!

The Huntington Study Group would like to acknowledge and thank the following individuals and organizations for their support of myHDstory™

  • Griffin Foundation
  • NJ Cure HD
  • Ira Shoulson
  • Elise Kayson-Rubin and Richard Rubin

Bookmark this page to keep up to date on future myHDstory™ studies from the Huntington Study Group.

KINECT-HD2

A Clinical Study for Huntington Disease Chorea

ABOUT HUNTINGTON DISEASE

One of the defining symptoms of HD is chorea, which is characterized by abnormal, abrupt, irregular movements. As HD progresses, chorea can become more frequent and severe, negatively impacting quality of life. While there is no established treatment to delay onset or progression of HD, a product called valbenazine is being evaluated as a potential treatment for HD-associated chorea.

PURPOSE OF THE KINECT-HD2 STUDY

Valbenazine (valbenazine tosylate, NBI-98854) is a selective, orally active VMAT2 inhibitor developed by Neurocrine Biosciences, Inc. that is being investigated for the treatment of chorea associated with Huntington disease (HD). The study drug, valbenazine, has been approved by the United States Food and Drug Administration (FDA) in April 2017 for the treatment of adults with tardive dyskinesia (TD), under the trade name INGREZZA®.

KINECT-HD2 is an Open-Label Rollover Study for Continuing Valbenazine Administration for the Treatment of Chorea Associated with Huntington Disease.

All subjects in Study NBI-98854-HD3006 will self-administer a once-daily (qd) dose of valbenazine 20 mg to 80 mg for up to 104 weeks.

The objectives of KINECT-HD2 are to:

• Evaluate the long-term safety and tolerability of valbenazine, administered once daily (qd) for up to 104 weeks in subjects with Huntington disease
• Evaluate long-term maintenance of effect of valbenazine for the treatment of chorea associated with HD in approximately 150 subjects with HD.

WHO MAY QUALIFY?

This study will enroll approximately 150 medically stable male and female subjects with genetically confirmed motor manifest HD; approximately 120 of which will rollover from the KINECT-HD study (NBI-98854-HD3005). Subjects who early terminated Study NBI-98854-HD3005 for administrative reasons due to coronavirus disease 2019 (COVID-19) may also enroll into the KINECT-HD2 study.

Eligible participants must meet the following criteria, in addition to other criteria:

• Male or female, ages of 18 to 75 years
• Diagnosis of motor manifest HD
• Have sufficient chorea symptoms to meet study protocol criteria
• Willing and able to comply with the study instructions

There are additional eligibility requirements that the Clinical Investigator can explain to you.

STUDY SCHEDULE

Participation in the KINECT-HD2 study will last up to 112 weeks, but study participants are not required to stay in the study for its entire duration. The intent of the duration is to provide access to valbenazine until it is anticipated to be available commercially for the treatment of chorea associated with HD, subject to approval by the FDA and any other applicable regulatory authorities. The study includes a screening period, a study drug period, and a follow-up period. Participants will attend eighteen (18) in-person study visits throughout the study. An additional five (5) visits will be conducted by phone or video call.

Subjects rolling over from KINECT-HD (NBI-98854-HD3005)

Subjects rolling over from KINECT-HD (NBI-98854-HD3005) have some additional options for timing initial KINECT-HD2 visits with those of KINECT-HD. Subjects rolling over into KINECT-HD2 should speak with their Study Site Investigator or Study Site Coordinator as soon as possible to discuss and understand all available scheduling options.

Subjects who did not participate in KINECT-HD (NBI-98854-HD3005)

Subjects who did not participate in the KINECT-HD Study (NBI-98854-HD3005) must complete all screening assessments and assessments required at baseline.

Screening

The screening period is only applicable for subjects who did not rollover from KINECT-HD (NBI-98854-HD3005) or those who had their final KINECT-HD visit >30 days prior to anticipated baseline (Day -1) for KINECT-HD2 (NBI-98854-HD3006), or had been early terminated for administrative reasons due to COVID-19 from KINECT-HD.

After you consent to participate in the study, you will need to attend a screening visit, where your Clinical Investigator will perform tests and procedures to confirm your eligibility to take part in the study. The screening portion of the study will last up to four (4) weeks.

Study Drug Dosing

If you qualify based on the study eligibility criteria, you will be in this part of the study for up to 104 weeks. During this part of the study, you will first enter the dose adjustment period for eight (8) weeks. During the dose-adjustment period, the Clinical Investigator will increase your dose to the next dose level if, in the Clinical Investigator’s opinion, you have tolerated the study drug at the current dose.

Following the 8-week dose adjustment period, you will enter a dose maintenance period until Week 104. During the maintenance period, your dose of the study drug valbenazine will be maintained.  However, if you are not able to tolerate the study drug, Clinical Investigator may adjust the dose to be lower.

Follow-Up

A final checkup will be done at Week 108.

HOW TO PARTICIPATE IN THIS CLINICAL TRIAL

KINECT-HD2 is being conducted by the Huntington Study Group (HSG), a leader in HD clinical trials for over 25 years. KINECT-HD2 will take place in approximately 45 study centers in the United States and Canada.

If you are interested in participating in KINECT-HD2, please contact the site nearest to you. Study center personnel will determine your eligibility to participate in the KINECT-HD2 study. You can also contact the Huntington Study Group to inquire about KINECT-HD2.

Call Toll-Free (North America): 800-487-7671
Email: info@hsglimited.org

Frequently Asked Questions (FAQs)

Valbenazine (valbenazine tosylate, NBI-98854) is a selective, orally active VMAT2 inhibitor developed by Neurocrine Biosciences, Inc. Valbenazine is being investigated for the treatment of chorea associated with HD.  Valbenazine was approved by the United States Food and Drug Administration (FDA) in April 2017 for the treatment of adults with tardive dyskinesia (TD), under the trade name INGREZZA®.

Twenty-seven clinical studies with valbenazine have been completed to date: 16 Phase 1 studies in healthy subjects or special populations (for example, patients with impaired liver or kidney function); 7 Phase 2 or 3 studies in subjects with TD, and 4 Phase 1b or 2 studies in subjects with Tourette syndrome (TS; 1 in adults; 2 in children and adolescents; and 1 in children, adolescents, and adults).

Most commonly-reported side effects with valbenazine administration include drowsiness, tiredness and sedation (feeling calm, relaxed or sleepy).

Valbenazine is being evaluated as a symptomatic treatment of involuntary movement (chorea) associated with HD. Valbenazine is not an approved treatment or cure for HD.

Valbenazine was approved by the United States Food and Drug Administration (FDA) in April 2017 for the treatment of adults with tardive dyskinesia (TD), under the trade name INGREZZA®.

Yes. KINECT-HD2 is actively seeking to enroll 30 additional participants that were not part of the KINECT-HD double-blind study. Approximately 120 KINECT-HD (NBI-98854-HD3005) participants are anticipated to rollover, for a total of approximately 150 total subjects in KINECT-HD2.

Yes. There are several requirements that a participant must meet to be enrolled in KINECT-HD2, including the following:

• Be male or female, ages of 18 to 75 years
• Have a diagnosis of motor manifest HD
• Have sufficient chorea symptoms to meet study protocol criteria
• Is willing and able to comply with the study instructions

There are additional eligibility requirements that the Clinical Investigator can explain to you.

Participants enrolled in KINECT-HD2 will participate up to 112 weeks. The participation timeline includes a 4-week screening period for subjects who did not participate in KINECT-HD, an 8-week dose-adjustment period, a 96-week maintenance period, and a follow-up visit two weeks later.

KINECT-HD2 is an open-label rollover study. This means that participants will be dosed on study drug. There is no placebo in the open-label study (OLE). Valbenazine will be supplied as orally administered capsules containing 20, 40, 60, or 80 mg of valbenazine. Subjects must swallow the capsules with approximately 4 ounces of water or other liquid, with or without food.

Yes. All participants must provide their written informed consent before being screened and participating in the study.

The KINECT-HD2 study is being conducted by the Huntington Study Group on behalf of Neurocrine Biosciences, Inc. Interested participants are encouraged to speak with their doctor about the study and may contact the Huntington Study Group to find the nearest participating site.

Toll-free phone (North America): 800-487-7671
Email: info@hsglimited.org

What You Should Know About Clinical Research Studies

WHAT IS A CLINICAL RESEARCH STUDY?

Clinical research studies, also called clinical trials, are research studies in which participants are asked to take a study drug under the supervision of a physician and other research professionals.

Clinical research studies must be approved by an institutional review board (IRB). An IRB is a group that is responsible for helping to protect the rights and welfare of study participants. In addition, every study participant is monitored with study-required medical tests and exams before, during, and sometimes even after the study.

CAN I LEAVE THE STUDY IF I CHANGE MY MIND?

Participation in any clinical research study is completely voluntary, and participants may choose to leave the study at any time for any reason. If you would like to leave the study, you should discuss this with your Clinical Investigator, who will give you information about how to do this safely.

KINECT-HD2 STUDY LOCATIONS

KINECT-HD2 will be conducted at several of the same research sites which conducted KINECT-HD.

If you are interested in participating in KINECT-HD2, you may contact the Huntington Study Group to find the nearest available participating KINECT-HD2 research site.

Call Toll-Free (North America): 800-487-7671
Email: info@hsglimited.org

PROOF-HD-FR

(France)

Résultat de la pridopidine sur la fonction dans la maladie de Huntington

PRidopidine Outcome On Function in Huntington Disease (PROOF-HD)

OBJECTIF DE L’ÉTUDE PROOF-HD

PROOF-HD est une étude de phase 3, randomisée, en double aveugle, contrôlée par placebo, évaluant l’efficacité et la sécurité d’emploi de la pridopidine chez des patients atteints de la maladie de Huntington au stade précoce. La pridopidine est une petite molécule développée par Prilenia pour le traitement des troubles neurodégénératifs tels que la maladie de Huntington (MH). La pridopidine se lie et active le récepteur Sigma-1 (S1R), une protéine qui est exprimée à des niveaux élevés dans le cerveau. Le S1R régule les principales voies cellulaires, fréquemment altérées au cours de la neurodégénérescence.1

La pridopidine, par l’activation du S1R, a montré des effets bénéfiques dans de nombreux modèles cellulaires et animaux portant sur la MH. Par exemple, la pridopidine sauve les neurones de la mort cellulaire induite par la huntingtine mutante (HTTm) dans les cellules souches pluripotentes induites (CSPi) dérivées des patients atteints de MH et dans les neurones MH de souris.2 En outre, les souris atteintes de MH traitées avec la pridopidine montrent une amélioration de multiples fonctions comportementales et motrices.6,7

Une étude d’imagerie TEP chez l’homme a démontré qu’à la dose de 45 mg deux fois par jour (2x/j) (la dose testée dans cette étude), la pridopidine occupe ~90 % du S1Rs dans le cerveau. Cela est très important car cela renforce la justification de la dose appropriée à tester dans le cadre de l’essai clinique.

Fait important, de nombreuses données cliniques antérieures portant sur la pridopidine démontrent que ce médicament dispose d’un profil de sécurité d’emploi favorable et qu’il est bien toléré.

L’objectif de cette étude est d’évaluer l’effet de la pridopidine à la dose de 45 mg deux fois par jour (2x/j) sur la capacité fonctionnelle, ainsi que sur les caractéristiques motrices et comportementales chez les participants atteints de MH au stade précoce.

Dans une étude clinique récemment terminée portant sur la MH (PRIDE-HD), les participants recevant de la pridopidine à la dose de 45 mg deux fois par jour ont vu, au bout de 52 semaines, leur capacité fonctionnelle se maintenir par rapport aux patients recevant un placebo. Cela a été mesuré à l’aide de l’échelle d’évaluation unifiée pour la maladie de Huntington (Unified Huntington Disease Rating Scale, UHDRS) – Capacité fonctionnelle totale (Total Functional Capacity, TFC).11

L’échelle UHDRS-TFC est un outil répandu utilisé par les cliniciens pour évaluer le stade de la MH et le niveau de capacité fonctionnelle des patients. L’échelle est dirigée par des tâches qui ont une grande pertinence pour les patients atteints de MH et leurs familles, et elle évalue la capacité des patients à travailler, à gérer leurs finances, à tenir une maison, à prendre soin d’eux-mêmes, et à vivre chez eux de façon indépendante. Le TFC est plus adapté pour évaluer la capacité fonctionnelle des patients atteints de MH à un stade précoce.

QUI PEUT PARTICIPER À L’ÉTUDE?

Les participants éligibles doivent satisfaire aux critères suivants, en plus d’autres critères:

• Homme ou femme, âgé(e) de 25 ans et plus, en mesure de donner un consentement éclairé.
• Avoir reçu un diagnostic de MH basé sur des caractéristiques cliniques.
• Avoir une présence confirmée de 36 répétitions CAG ou plus dans le gène de la huntingtine.
• Doit être atteint d’une MH de l’adulte avec apparition de signes et de symptômes à 18 ans ou plus.
• Doit être disposé et en mesure de se conformer aux instructions de l’étude.

Il existe des conditions d’éligibilité supplémentaires, que l’investigateur principal (IP) pourra vous expliquer.

CALENDRIER DE L’ÉTUDE

L’étude comporte une période de sélection, une période de traitement en double aveugle (étude principale) et une période d’extension en ouvert (Open-label extension, OLE).

Sélection

Après avoir signé le consentement éclairé, les participants feront l’objet d’évaluations de sélection afin de déterminer leur éligibilité.

Période de traitement

La période de sélection sera suivie d’une période de traitement en double aveugle qui durera entre 65 et 78 semaines (étude principale).

Extension en ouvert (OLE)

Les participants éligibles qui auront terminé l’étude principale auront la possibilité d’intégrer une période OLE et de recevoir de la pridopidine (aucun patient ne recevra le placebo au cours de la période OLE).

PLAN D’ATTÉNUATION DES RISQUES LIÉ À LA MALADIE À CORONAVIRUS 2019 (COVID-19)

Des mesures d’atténuation proactives visant à garantir la sécurité des participants et l’intégrité de l’étude pendant la pandémie de COVID-19 (ou toute urgence de santé publique) sont incluses dans cette étude. Des visites virtuelles ont été incorporées au protocole pour garantir la sécurité des participants et minimiser le risque de données manquantes. En outre, des visites au centre pourront être converties en visites virtuelles si nécessaire.

COMMENT PARTICIPER À CET ESSAI CLINIQUE

L’étude PROOF-HD est menée par Prilenia Neurotherapeutics (« promoteur ») en partenariat avec le groupe d’étude sur la maladie de Huntington (Huntington Study Group, HSG). L’étude PROOF-HD aura lieu en Amérique du Nord et en Europe.

Afficher les emplacements des centres actifs de l’étude

Amérique du Nord

Si vous êtes intéressé(e) par une participation à l’étude PROOF-HD en Amérique du Nord, veuillez contacter le HSG pour trouver le centre le plus proche de chez vous. Le personnel du centre de l’étude déterminera votre éligibilité à participer à l’étude PROOF-HD.

Vous pouvez appeler gratuitement le numéro suivant (Amérique du Nord): 800-487-7671
E-mail: info@hsglimited.org

Europe

Si vous êtes intéressé(e) par une participation à l’étude PROOF-HD en Europe, veuillez contacter le partenaire européen du HSG. Le personnel du centre de l’étude déterminera votre éligibilité à participer à l’étude PROOF-HD.

Obtenir les coordonnées des centres européens

QUESTIONS FRÉQUEMMENT POSÉES (FAQ)

Qu’est-ce que la pridopidine?

La pridopidine est une petite molécule développée par Prilenia pour le traitement des troubles neurodégénératifs, tels que la maladie de Huntington (MH). La pridopidine se lie et active le récepteur Sigma-1 (S1R), une protéine qui est exprimée à des niveaux élevés dans le cerveau. Le S1R régule les principales voies cellulaires, généralement altérées dans le cadre de la neurodégénérescence.1

La pridopidine, par activation du S1R, démontre des effets bénéfiques chez de nombreux modèles cellulaires et animaux de MH. Par exemple, la pridopidine sauve les neurones de la mort cellulaire induite par la huntingtine mutante (HTTm) dans les cellules souches pluripotentes induites (CSPi) par un patient atteint de MH et dans les neurones MH de souris.2 En outre, les souris atteintes de MH traitées avec la pridopidine montrent une amélioration de multiples fonctions comportementales et motrices.6,7

D’autres essais cliniques ont-ils évalué la pridopidine?

Dans une étude clinique portant sur la MH récemment terminée (PRIDE-HD), les participants recevant une dose de la pridopidine de 45 mg, deux fois par jour, ont montré un maintien de la capacité fonctionnelle par rapport aux patients recevant le placebo, à 52 semaines. Cela a été mesuré par l’échelle unifiée d’évaluation de la maladie de Huntington – Capacité fonctionnelle totale (Unified Huntington Disease Rating Scale [UHDRS] – Total Functional Capacity [TFC]).11

L’échelle UHDRS-TFC est un outil accepté utilisé par les cliniciens pour évaluer le stade de la maladie MH et le niveau de fonctionnalité du patient. L’échelle est déterminée par des tâches hautement pertinentes pour les patients atteints de MH et leurs familles et évalue la capacité du patient à travailler, gérer ses finances, tenir son domicile, se prendre en charge lui-même et à vivre de façon indépendante chez lui. La TFC est la plus sensible pour évaluer la fonctionnalité chez patients atteints de la MH à un stade précoce.

Dans des études précédentes (HART et MermaiHD), la pridopidine 45 mg deux fois par jour a démontré des effets bénéfiques sur la fonction motrice dans le cadre de la MH, telle que mesurée par Score moteur total (SMT) de l’UHDRS.

Des données de sécurité exhaustives provenant de 1 334 sujets traités par la pridopidine et accumulées jusqu’à environ 1 300 personnes-années d’exposition indiquent que la pridopidine est un médicament sûr et bien toléré.

La pridopidine peut-elle arrêter ou contribuer à maintenir la fonction de patients atteints de MH?

Les résultats provenant d’études antérieures sur la pridopidine suggèrent un effet bénéfique potentiel de la pridopidine (45 mg deux fois par jour) sur le maintien de la capacité fonctionnelle chez les patients atteints de MH. Le maintien de la capacité fonctionnelle est un besoin critique non satisfait dans le traitement des patients atteints de MH.

Il n’y a aucune garantie que la participation à la présente étude aidera le participant ; le participant pourrait recevoir un traitement placebo.

L’étude PROOF-HD recrute-t-elle actuellement des participants?

Oui. L’étude PROOF-HD recrute activement environ 480 patients à travers le monde.

Existe-t-il des critères de qualification ou d’exclusion spécifiques à cette étude?

Oui. Un participant doit remplir plusieurs conditions pour être inclus dans l’étude PROOF-HD, notamment les suivantes:

• Être un homme ou une femme, âgé(e) de 25 ans ou plus, capable de donner un consentement éclairé signé.
• Avoir reçu un diagnostic de MH basé sur les caractéristiques cliniques.
• Avoir confirmé la présence de répétitions CAG de 36 ou plus dans le gène de la huntingtine.
• Être atteint(e) de MH déclarée à l’âge adulte avec apparition des signes et des symptômes à l’âge de 18 ans ou plus.
• Être disposé(e) et capable de se conformer aux instructions de l’étude.

Il existe des conditions d’éligibilité supplémentaires que l’investigateur principal peut vous expliquer.

Vais-je recevoir le médicament à l’étude (pridopidine) ou un pla?

Les participants éligibles seront affectés au hasard (comme en tirant à pile ou face) pour recevoir soit de la pridopidine, soit un placebo. Ni le participant ni le médecin/personnel du site ne sauront si le patient reçoit de la pridopidine ou un placebo (c’est ce qu’on appelle une étude en double aveugle).

Mon consentement est-il requis pour cette étude?

Oui. Tous les participants doivent fournir un consentement éclairé avant d’être sélectionnés et de participer à l’étude.

Comment trouver un site d’étude et être inclus(e)?

L’étude PROOF-HD est menée par Prilenia Therapeutics (« promoteur ») en partenariat avec le groupe d’étude sur la maladie de Huntington (Huntington Study Group, HSG). L’étude PROOF-HD sera menée en Amérique du Nord et en Europe. Les sites supplémentaires et leurs coordonnées sont disponibles à la page Study Locations (Sites de l’étude) de l’étude PROOF-HD.

CENTRES ACTIFS DE L’ÉTUDE PROOF-HD

La liste suivante comprend tous les centres de l’étude PROOF-HD qui ont été activés et qui recrutent actuellement des participants. Cette liste sera mise à jour au fur et à mesure que d’autres centres de l’étude seront activés.

Si vous souhaitez participer à l’étude PROOF-HD, veuillez contacter le groupe d’étude de Huntington (HSG) pour être mis en relation avec le centre le plus proche de chez vous. Le personnel du centre de l’étude déterminera votre éligibilité à participer à l’étude PROOF-HD.

Appelez sans frais (Amérique du Nord): 800-487-7671
E-mail: info@hsglimited.org

EUROPE

PaysVilleLieuPersonne à contacter
FranceLilleCentre Hospitalier Universitaire (CHU) of Lille – Hôpital Roger SalengroEric Decorte, Coordinateur d’étude
E-mail: eric.decorte@chru-lille.fr
MarseilleHôpitaux Universitaires de Marseille TimoneE-mail: Laura Laura.MUNDLER@ap-hm.fr
ParisCentre Hospitalier Universitaire (CHU) Henri MondorTiffany Monnier, Coordinateur d’étude
Tel: 01.49.81.37.93
EspagneBarcelonaHospital de la Santa Creu i Sant PauDr. Jaime Kulisevsky
E-mail: JKulisevsky@santpau.cat
Tel: +34 649 14 23 60
BurgosLa Fundación Burgos por la Investigación de la Salud (FBIS)Tel:  +34 947 28 18 00 ext 35380
E-mail: jessicajrp@hubu.esmcubo@saludcastillayleon.es
MadridHospital Ramón y CajalE-mail: joselopezsendon@hotmail.com
Tel: +34  638 158 849
ValenciaFundacion Hospital Universitario La FeFrancisco Castera, Coordinateur d’étude
E-mail: franciscocasteraenroll@gmail.com

Carmen Peiro, Chercheur d’étude
E-mail: cpeirov@gmail.com

Tel: +34 682893185
AllemagneAachenEuregional Huntington Center Aachen (EHZA)Maha Sagar, Coordinateur d’étude
E-mail: NeuroStudien@ukaachen.de
Tel: +49 241 80 80697
BochumHuntington Center North Rhine-Westphalia,
Department of Neurology,
Ruhr-University Bochum,
St. Josef-Hospital Bochum
E-mail: d.kaminski@klinikum-bochum.de
Tel.: +49-234-509-2703
LübeckUniversität zu LübeckSaruhi Surnaschjan, Coordinateur d’étude 
Tel:+49 451 50043497
E-mail: saruhi.surnaschjan@neuro.uni-luebeck.de
MünsterGeorge Huntington InstitutTel: +49 251 7887880
E-mail: info@ghi-muenster.de
Taufkirchen (Vils)Kbo-Isar-Amper-Klinikum Taufkirchen (Vils)Michael Bachmaier, Coordinateur d’étude
E-mail: Michael.Bachmaier@kbo.de
Tel: 08084-934-417
UlmUniversitätsklinikum Ulm, Abt. NeurologieSonja Trautmann, Coordinateur d’étude
Tel:  +49 731 50063083
 
Ariane Schneider, Coordinateur d’étude
Tel: +49 731 50063126
L’AutricheInnsbruckMedizinische Universität InnsbruckDora Valent, Coordinateur d’étude
Tel: 0512 504 83237
E-mail: dora.valent@tirol-kliniken.at
ItalieBariUniversita’ di Bari
BolognaIRCCS Istituto delle Scienze Neurologiche di BolognaTel: +393387367104
E-mail: unitastudiclinici@ausl.bologna.it
MilanoFondazione IRCCS Istituto Neurologico Carlo BestaTel: +39 02 23942519
E-mail: centroHD@istituto-besta.it
NaplesUniversità di Napoli Federico IIE-mail: centrohd.unina@gmail.com
Tel: +39 081 5455213
RomaCSS-Mendel Institute at IRCCS Casa Sollievo della Sofferenza Research HospitalTel: +39 06 44700887
E-mail: info@lirh.it
Les Pays-BasLeidenLeiden University Medical CenterTel: 0031715265442 
E-mail: huntington@lumc.nl
MaastrichtMaastricht UniversityDr. Mayke Oosterloo, Chercheur d’étude
Tel: 0031-(0)43-387 76 76, E-mail: expertisecentrumhuntington@mumc.nl
PologneGdanskSzpital Specjalistyczny Swietego WojciechaAgnieszka Konkel, Coordinateur d’étude
Tel: +48 609 952 555
E-mail: konkel1989@gmail.com
KrakowKrakowska Akademia NeurologiiE-mail: centrum@neurologia.org.pl 
Tel: +48 12 426 92 80
VarsovieInstytut Psychiatrii i NeurologiiGrzegorz Witkowski, Chercheur d’étude
E-mail: gwitkowski@ipin.edu.pl
Tel: +48694904208
République TchèquePragueCentrum extrapyramidových onemocněníJiri Klempir, MD, Chercheur d’étude
Tel:   +420  732 273 271
E-mail:  Jiri.Klempir@seznam.cz
Royaume-UniAberdeen (Écosse)University of Aberdeen, Institute of Medical SciencesStella Sihlabela, Coordinateur d’étude
Tel: +44 1224 552120
E-mail: stella.sihlabela@nhs.scot

Resifina Seyara, Coordinateur d’étude
Tel: +44 1224 552120
E-mail: resifina.seyara@nhs.scot
Birmingham (Angleterre)Barberry National Centre for Mental Health
Cardiff (Pays de Gales)Cardiff UniversityAlison Johnson, Coordinateur d’étude
E-mail: Alison.Johnson@wales.nhs.uk
Newcastle (Angleterre)Newcastle upon Tyne Hospitals NHS Foundation

AMÉRIQUE DU NORD

Canada

ProvinceVilleLieu Personne à contacter
AlbertaCalgaryUniversity of CalgaryLorelei Tainsh, Coordinateur d’étude
Tel: (403) 220-8413
E-mail: derwent@ucalgary.ca
British ColumbiaVancouverUniversity of British ColumbiaMike Adurogbangba, Coordinateur d’étude
E-mail: madurogbangba@cmmt.ubc.ca
Tel: (604) 822-4872
Nova ScotiaHalifaxHalifax Infirmary QEII Health Services CenterMadie El-aghil, Coordinateur d’étude
Tel: (902) 431-8783 Ext: 115
E-mail: madie.el-aghil@truenorthcr.com
QuebecMontrealCHUM Hospital of Notre DameVicky Thiffault, Coordinateur d’étude
Tel: (514) 890-8000, ext 15921
E-mail: vicky.thiffault.chum@ssss.gouv.qc.ca

États Unis

ÉtatVilleLieuPersonne à contacter
CaliforniaSacramentoUniversity of California, Davis (UC Davis) Medical CenterBecky Craig, Coordinateur d’étude
Tel: (916) 734-3541
E-mail: rscraig@ucdavis.edu
San DiegoUniversity of California, San Diego (UCSD)E-mail: jcoreybloom@ucsd.edu
Tel: (858) 249-0569
ColoradoEnglewoodRocky Mountain Movement Disorder CenterJessica Jaynes, Coordinateur d’étude
Tel: (303) 357-5456
District of Columbia (D.C.)WashingtonGeorgetown UniversityRobin Kuprewicz, Coordinateur d’étude
Tel: (202) 893-1115
E-mail: rk1028@georgetown.edu
FloridaGainesvilleUniversity of FloridaKyle Rizer, Coordinateur d’étude
Tel: (352) 733-2426
E-mail: kyle.rizer@neurology.ufl.edu
TampaUniversity of South FloridaKelly (Kolleen) Elliott, Coordinateur d’étude
E-mail: kelliot@usf.edu  
GeorgiaAtlantaEmory UniversityElaine Sperin, Coordinateur d’étude
E-mail: esperin@emory.edu
IllinoisChicagoNorthwestern UniversityZsaZsa Brown, Coordinateur d’étude
Tel: (312) 503-4121
E-mail: zsazsa.brown@northwestern.edu
KansasKansas CityUniversity of Kansas Medical CenterCarolyn Gray, Coordinateur d’étude
Tel: (913) 588-6983
E-mail: cgray1@kumc.edu
WichitaHereditary Neurological Disease CentreGregory Suter, Coordinateur d’étude
Tel: (888) 232-4632
KentuckyLouisvilleUniversity of LousivilleAnnette Robinson, Coordinateur d’étude
E-mail: annette.robinson@louisville.edu
MarylandBaltimoreJohns Hopkins UniversityKia Ultz, Coordinateur d’étude
Tel: (410) 955-1349
E-mail: kcarte23@jhmi.edu
MassachusettsBostonBeth Israel Deaconess Medical CenterSophie Antonioli, Coordinateur d’étude
Tel: (617) 667-2355
E-mail: hdresearch@bidmc.harvard.edu
BostonMassachusetts General HospitalDr. Diana Rosas, Chercheur d’étude
Tel: (617) 726-9045
MissouriSt. LouisWashington University, St. LouisMatthew Lewis, Recrutement d’études
Tel: (314) 747-5916
E-mail: lmatthew@wustl.edu
New YorkAlbanyAlbany Medical CollegeE-mail: evanss@amc.edu
New York CityColumbia UniversityMiles DeGrazia, Coordinateur d’étude
E-mail: MQD2103@cumc.columbia.edu
North CarolinaDurhamDuke UniversityMcKenzie Luxmore, Coordinateur d’étude
E-mail: mckenzie.luxmore@duke.edu
Tel: (919) 684-0865
OhioCincinnatiUniversity of CincinnatiChristina Gruenwald, Coordinateur d’étude
Tel: (513) 558-0112
E-mail: gruenwcm@ucmail.uc.edu
ColumbusOhio State UniversityCasey Mitchell, Coordinateur d’étude
E-mail: casey.mitchell@osumc.edu
Tel:  (614) 685-9906

Katherine Ambrogi, Coordinateur d’étude
E-mail: katherine.ambrogi@osumc.edu
Tel: (614) 688-6685
OregonPortlandOregon Health & Sciences UniversityKeenan Ashby, Coordinateur d’étude
Tel: (503) 494-7245
E-mail: ashbyk@ohsu.edu
PennsylvaniaPhiladelphiaUniversity of PennsylvaniaJennifer Klapper, Coordinateur d’étude
Tel: (215) 829-5176
TennesseeNashvilleVanderbilt University Medical CenterDr. Daniel Claassen, Chercheur d’étude
Danielle Buchanan, Coordinateur d’étude
E-mail: danielle.a.buchanan@vumc.org
Tel: (615) 875-3274
TexasHoustonUniversity of Texas, HoustonJamie Sims, Coordinateur d’étude
Tel: 713-500-7763
E-mail: Jamie.Sims@uth.tmc.edu
VirginiaRichmondVirginia Commonwealth UniversityKelly Huckstep, Coordinateur d’étude
Tel: (804) 965-4283
E-mail: kelly.huckstep@vcuhealth.org
Washington (state)SeattleUniversity of WashingtonDebra Del Castillo, Coordinateur d’étude
Tel: (206) 543-3647
E-mail: debradel@uw.edu

Références

1 Su T-P, Hayashi T, Maurice T, Buch S, Ruoho AE. The sigma-1 receptor chaperone as an inter-organelle signaling modulator. Trends Pharmacol Sci [Internet]. 2010;31(12):557–66. Available from: http://dx.doi.org/10.1016/j.tips.2010.08.007

2 Chelsy Eddings, Nicolas Arbez, Sergey Akimov, Michal Geva, Michael Hayden Ross C, Eddings CR, Arbez N, Akimov S, Geva M, Hayden MR, et al. Pridopidine Protects Neurons from Mutant-Huntingtin Toxicity via the Sigma-1 Receptor. Neurobiol Dis. 2017;

3 Zuccato C, Cattaneo E. Brain-derived neurotrophic factor in neurodegenerative diseases. Nat Rev Neurol [Internet]. 2009;5(6):311–22. Available from: http://dx.doi.org/10.1038/nrneurol.2009.54

4 Kusumika Gharami, Yuxiang Xie, Juan Ji An, Susumu Tonegawa and BX. Public Access NIH Public Access. 2013;105(2):369–79.

5 Xie Y, Hayden MR, Xu B. BDNF Overexpression in the Forebrain Rescues Huntington’s Disease Phenotypes in YAC128 Mice. J Neurosci [Internet]. 2010;30(44):14708–18. Available from: http://www.jneurosci.org/cgi/doi/10.1523/JNEUROSCI.1637-10.2010

6 Marta Garcia-Miralles 1, Michal Geva, 2 Jing Ying Tan, 1 Nur Amirah Binte Mohammad Yusof 1, Yoonjeong Cha, 3 Rebecca Kusko, 3 Liang Juin Tan, 1 Xiaohong Xu, 1 Iris Grossman 2, Aric Orbach 2, Michael R. Hayden, 1, 2, 4 5, Pouladi1 and MA. Early pridopidine treatment improves behavioral and transcriptional deficits in YAC128 Huntington disease mice. JCI Insight. 2017;2(23):1–18.

7 Kusko R, Dreymann J, Ross J, Cha Y, Escalante-Chong R, Garcia-Miralles M, et al. Large-scale transcriptomic analysis reveals that pridopidine reverses aberrant gene expression and activates neuroprotective pathways in the YAC128 HD mouse. Mol Neurodegener. 2018;13(1):1–15.

8 Ryskamp D, Wu J, Geva M, Kusko R, Grossman I, Hayden M, et al. The sigma-1 receptor mediates the beneficial effects of pridopidine in a mouse model of Huntington disease. Neurobiol Dis [Internet]. 2017 Jan [cited 2019 Mar 12];97(Pt A):46–59. Available from: http://www.ncbi.nlm.nih.gov/pubmed/27818324

9 Geva M, Kusko R, Soares H, Fowler KD, Birnberg T, Barash S, et al. Pridopidine activates neuroprotective pathways impaired in Huntington Disease. Hum Mol Genet [Internet]. 2016 [cited 2019 Mar 12];25(18):3975–87. Available from: http://www.ncbi.nlm.nih.gov/pubmed/27466197

10 Smith-dijak AI, Nassrallah W, Zhang L, Geva M, Hayden M, Raymond L. Impairment and Restoration of Homeostatic Plasticity in Cultured Cortical Neurons from a Mouse Model of Huntington Disease.

11 Reilmann R, McGarry A, Mendis N, Schubert R, Skitt Z, Slawek J, et al. Safety and efficacy of pridopidine in patients with Huntington’s disease (PRIDE-HD): a phase 2, randomised, placebo-controlled, multicentre, dose-ranging study. Lancet Neurol. 2018;18(2):165–76.

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Past Annual Meetings

Past Annual Meetings of the Huntington Study Group

Follow the links below to look back at our prior meetings:

Availability of specific content is subject to limitations due to proprietary restrictions on the part of speakers, organizations, or the Huntington Study Group.

HSG 2021: Unmasking HD (Virtual)

HSG 2020: HD in Focus (Virtual)

HSG 2019: Navigating HD (Sacramento, CA)

HSG 2018: Unlocking HD (Houston, TX)

HSG 2017: Elevating HD (Denver, CO)

HSG 2016: Discovering Our Future (Nashville, TN)

HSG 2015: Building Our Future (Tampa, FL)

HSG 2014: Ideas For The Future (Minneapolis, MN)

HSG 2021

The 28th Annual Meeting of the Huntington Study Group

CONFERENCE NOW AVAILABLE ON-DEMAND!

Already registered?

November 4 – November 6, 2021

HSG 2021: UNMASKING HD took place November 4-6, 2021. Plenary, scientific, and research sessions occurred on Thursday and Friday. Our annual Family Day Symposium took place on Saturday. All sessions, including those with Q&A are now accessible on-demand until October 2022.

While we will not gather together this year in person, we have developed an interesting, novel, and innovative program that will be brought to you anywhere you are located. We will once again provide a highly engaging and interactive virtual online meeting using the Intrado platform. HSG 2021: UNMAKSING HD will provide many of the same experiences you are used to — but from the comfort of your home or office. All recorded content and booth spaces remain available for all registrants to access until November 2022!

INTERACTIVE SESSIONS – plenary presentations, panel discussions, with live Q&A sessions sharing the latest in research and treatments.

● An exciting virtual FAMILY DAY SYMPOSIUM for HD families to hear from HD experts and community advocates.

BREAKOUT SESSIONS and WORKING GROUPS.

● Virtual NETWORKING LOUNGE to meet up with, engage and collaborate with colleagues, friends, and experts.

● A virtual EXHIBIT HALL to engage with representatives from industry and advocacy.

● An interactive POSTER PAVILION to browse accepted research abstract posters, and engage with poster presenters during scheduled times.



ONLINE REGISTRATION

Registration is required to access HSG 2021: UNMASKING HD on-demand Online registration is currently open.

Note: Be sure to set your spam or junk settings to allow registration and reminder emails from the sender and domain Huntington@theonlinexpo.com.

Rates

– Family Day Only – Saturday (FREE!)
This package provides access to Saturday content only.

– HSG Credentialed Investigator $100.00 (USD)
This Package provides access to the entire event.

– Advocacy Organization or Non-Profit $150.00 (USD)
This Package provides access to the entire event.

– General registrant – all 3 days $150.00 (USD)
This Package provides access to the entire event.

-Industry/Pharma $500.00 (USD)
This Package provides access to the entire event.

– Students / Residents / Fellows (FREE)
Proof of current status required. Please email info@hsglimited.org to receive the fully discounted rate. This Package provides access to the entire event.

AGENDA & SCHEDULE*

HSG 2021 Plenary Sessions

Thursday, November 4, 2021

All times listed are for U.S. Eastern Standard Time

  • 10:00 am – HSG 2021 Welcome and State of the Union
  • 10:45 am – HSG 2021 Keynote: Challenge of processing and characterizing postmortem human brains to investigate the pathogenesis of Huntington disease (Jean Paul Vonsattel)
  • 11:45 am – HD Insights of the Year (Tyler VanderWeele)
  • 12:15 pm – Inspirational Speaker (Alexandra Drane)
  • 1:15 pm – Visit the Poster Pavilion and Exhibit Hall
  • 1:45 pm – DNA Repair in Huntington’s Disease (Lesley Jones)
  • 2:15 pm – Genetic Counseling for predictive HD testing: expanding access (Kate Foreman)
  • 2:45 pm – Postmortem Brain Imaging in Juvenile Huntington’s Disease (Tim Koscik)
  • 3:15 pm – HSG Studies – myHDstory (Karen Anderson)
  • 3:30 pm – BREAK – check out the Networking Lounge
  • 3:45 pm – HD Innovators Forum with Live Q&A Panel (Neubase, NeuExcell, Ophidian, PTC, Triplet)

Friday, November 5, 2021

All times listed are for U.S. Eastern Standard Time

  • 10:00 am – Evaluation of a long-term physical therapist-led intervention to promote physical activity in Huntington’s disease: results from the PACE-HD study (presented by Monica Busse-Morris, live Q&A with Lori Quinn)
  • 10:30 am – HSG Studies – vUHDRS® (Samuel Frank, Jody Goldstein)
  • 10:45 am – An update from the tominersen clinical development programme (Scott Schobel, Peter, McColgan)
  • 11:00 am – HSG Studies – PROOF-HD (Michael Hayden – Prilenia)
  • 11:30 am – HSG Studies – KINECT-HD (Dietrich Haubenberger – Neurocrine)
  • 12:00 pm – Visit the Poster Pavilion and Exhibit Hall
  • 12:30 pm – HSG Working Group Presentations (Nora Fritz, Lori Quinn, Jamie Adams)
  • 1:30 pm – Peter Como Symposium Platform Presentation (Sara Picó)
  • 2:00 pm – Can we modify HD with Alfy? (Ai Yamamoto)
  • 2:30 pm – Decoding CSF mutant HTT (Doug Langbehn, Steven Smith, Amber Southwell)
  • 3:00 pm – BREAK – check out the Networking Lounge and Sponsor booths
  • 3:15 pm – Clinical Trials Roundup with Live Q&A Panel (Enroll-HD, HDClarity, Novartis, Sage, uniQure, Wave, Vaccinex)
  • 5:15 pm – Closing Remarks

*Agenda, speakers, and times are subject to change. Check back here for updates and posted agenda as we get closer to the event.


HSG 2021 Family Day Symposium
“Come Together… Right Now!”

View/Download the Family Day Flyer

Saturday, November 6, 2021

All times listed are for U.S. Eastern Standard Time

  • 10:00 am – HSG 2021 FAMILY DAY Welcome & Kickoff (Andrew Feigin, Elise Kayson)
  • 10:15 am – Letting the Genie Out of the Bottle (Martha Nance)
  • 10:45 am – Q&A: What’s on Your Mind? (Martha Nance, Andrew Duker, Jee Bang, Jaime Hatcher-Martin)
  • 11:00 am Breakout Session – HD 101 (Andrew Duker)
  • 11:00 am Breakout Session – New and upcoming research in therapeutics (Jee Bang, Wenzhen Duan)
  • 11:00 am Breakout Session – Who is the HSG? (Andrew Feigin, Elise Kayson, Shari Kinel)
  • 11:40 am – Break
  • 11:45 am Breakout Session – Huntington disease – What’s New… and What’s Not (Matt Bower)
  • 11:45 am Breakout Session – Huntington’s Disease: A Complementary & Integrative Approach (Danny Bega)
  • 11:45 am Breakout Session – Meet Jim Gusella!
  • 12:25 pm – Break
  • 12:30 pm Breakout Session – Demystifying behavior in Huntington disease (Katherine McDonell)
  • 12:30 pm Breakout Session – Stand Up and JOIN-HD (Lauren Byrne)
  • 12:30 pm Breakout Session – Meet Victor Sung and Sam Frank!
  • 1:10 pm – Roche Update (Peter McColgan and Lauren Boak, moderated by Jee Bang)
  • 1:30 pm – Research Blitz (Neurocrine – Daniel Claassen, Prilenia – Michael Hayden, uniQure – Erin Furr Stimming, Wave – Ralf Reilmann, Novartis – Blair Leavitt, Sage – Aaron Koenig, HDClarity – Ed Wild)
  • 2:40 pm – Q&A – Ask the Investigators Working on the Trials

*Agenda, speakers, and times are subject to change. Check back here for updates and posted agenda as we get closer to the event.


ABSTRACT POSTER SUBMISSION & VIRTUAL POSTER HALL

*NEW THIS YEAR!* Submitted abstracts chosen by the HSG Publications Committee were published in the Journal of Huntington’s Disease.

Click to View Publication

Abstracts must be submitted in accordance with the Journal of Huntington’s Disease Manuscript Submission & Author Instructions Policy. In particular, submitters are asked to adhere to the following. Failure to adhere to the guidelines by result in rejection of your submission:

The abstract for research papers should follow the “structured abstract” format:

BACKGROUND:
OBJECTIVE:
METHODS:
RESULTS:
CONCLUSIONS:

The abstract should try to be no longer than 250 words.

Submitters are required to submit the edited abstract in MS Word format (.DOC or .DOCX). A detailed summary of the abstract or full plain text version is also required to be entered or pasted into the appropriate submission portal field.

Authors are requested to use the Vancouver citation style. Place citations as numbers in square brackets in the text. All publications cited in the text should be presented in a list of references at the end of the manuscript. List the references in the order in which they appear in the text. Only articles published or accepted for publication should be listed in the reference list. We discourage textual references to unpublished and unavailable data. With permission, the author can reference a personal communication with name in the discussion section. If an article has a DOI, this should be provided after the page number details. The number is added after the letters ‘doi’. Manuscripts will not be considered if they do not conform to the Vancouver citation guidelines.

Please DO NOT INCLUDE tables, figures, supplementary material, or graphics in your abstract submission. Tables, figures, supplementary materials, and additional graphics may be included in your poster and virtual poster booth configuration.

Attendees will “experience” a virtual poster event that replicates everything the HSG Annual Meeting poster sessions have come to be known for. Abstract posters will be presented in our Virtual Poster Pavilion. Each abstract selected by the HSG Publications Committee will be provided a configurable poster booth that can include a short introductory video, a headshot picture of the presenter, a PDF of the detailed poster and abstract, a Q&A chat box to interact with the poster presenter, and any other relevant reference materials the author or presenter want to include.

KEY ABSTRACT DATES FOR HSG 2021:

– Regular Abstract Submission Closes: July 31, 2021
– Regular Abstract Selection Notification: August 31, 2021
– Late-breaking Abstract Submission: September 1-10, 2021*

*Late-Breaking Abstract Submission period occurs after key print deadlines and will only be eligible to present at a poster booth. Late-breaking abstracts are not included in the online publication of HSG 2021 Abstracts in the Journal of Huntington’s Disease.

Update (September 13, 2021): Abstract submissions are no longer being accepted for HSG 2021: UNMASKING HD.

SPONSORSHIP & EXHIBITOR OPPORTUNITIES

The Huntington Study Group has updated HSG 2021: UNMASKING HD sponsor and exhibitor packages with some exciting opportunities to maintain a consistent experience as our usual in-person event. Please contact Kristin Strazdins to request our HSG 2021 Sponsor/Exhibitor Packet and book your organization’s presence at this premier annual event!

Kristin Strazdins
Email: kristin@hsglimited.org
Phone (toll-free): 1-800-487-7671

HSG 2021: UNMASKING HD Sponsors

Roche - Genentech

Novartis

Sage Therapeutics

Teva Pharmaceuticals

uniQure

PTC Therapeutics

Mitochon Pharmaceuticals

Spark Therapeutics

Wave Life Sciences

Huntington's Disease Youth Organization

HD Reach

Return to Our Annual Meeting overview page

HSG Financial Disclosures

Financials

To see the Huntington Study Group’s 2016 990, click here .

To see the Huntington Study Group’s 2015 990, click here .

To see the Huntington Study Group’s 2014 990, click here .

Policies

To view the Huntington Study Group LTD Policy Regarding Facilities and Administrative (Indirect) Cost Rates for Internally Funded Initiatives, click here .

HD Insights

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