HSG Announces 30th Annual Meeting
Rochester, NY — March 21, 2023 — The Huntington Study Group (HSG), a world leader in conducting clinical trials and providing educational programming for Huntington’s disease (HD), recently announced that their 2023 Annual Meeting will be held November 2-4, 2023 at the Sheraton Grand at Wild Horse Pass in Chandler, AZ, a little south of Phoenix.
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Huntington Study Group Names First Chief Innovation Officer
Rochester, NY — January 10, 2023 — The Huntington Study Group (HSG), a world leader in clinical research for Huntington’s Disease (HD) for over 30 years, today announced Brett Kinsler has been named to the newly created position of Chief Innovation Officer (CINO). Kinsler will build on HSG’s remarkable history of mission-focused, transformative advances in clinical trial work
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Clinical Research Organization, Huntington Study Group “Firsts” Continue
Rochester, NY – December 5, 2022 – The Huntington Study Group (HSG), a world leader in conducting clinical trials for Huntington’s Disease (HD), through its Clinical Research Organization (CRO), HSG Clinical Research, Inc. (HSGCR), continues making groundbreaking progress in the HD world. At their Annual Meeting in November, the HSG team presented exciting updates about
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Huntington Study Group Annual Meeting
Rochester, NY – November 29, 2022 – The Huntington Study Group (HSG), a world leader in conducting clinical trials for Huntington’s Disease (HD), recently held its 29th Annual Meeting in Tampa, FL. This renowned meeting brings together HD thought leaders, scientific experts, industry partners and sponsors, advocacy groups, and HD family and community members from
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Huntington Study Group Announces Results from the HD-Net Assessment on the State of Care for Huntington’s Disease in the United States
Rochester, NY — October 25, 2022 — The Huntington Study Group (HSG), a world leader in clinical research for Huntington’s Disease (HD) for over 30 years, is pleased to announce the results from the novel HD-Net survey, which examined the United States Huntington’s disease (HD) care delivery in a variety of clinic settings by HD specialists and non-specialists.
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Huntington Study Group Announces myHDstory™ Pilot Study: Making HD Voices Heard Has Reached Target Enrollment
Rochester, N.Y. — October 18, 2022 — The Huntington Study Group (HSG), a world leader in clinical research for Huntington’s Disease (HD) for over 30 years, is pleased to announce that the pilot study, Making HD Voices Heard, on the new online research platform, myHDstory™, has reached its enrollment target. “The HSG is beyond thrilled by the level
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Huntington Study Group Enrolls First Participant for Its Observational Study to Test the Reliability of the Virtual Use of the Unified Huntington’s Disease Rating Scale® in Clinical Trials for Huntington’s Disease
Rochester, N.Y. — October 12, 2022 — The Huntington Study Group (HSG), a world leader in conducting clinical trials for Huntington’s Disease (HD) for over 30 years, together with its Clinical Research Organization (“CRO”), the HSG Clinical Research, Inc., today announces the enrollment of the first participant of its novel and innovative observational study, Virtual Unified Huntington’s
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HSG UPDATES: vUHDRS® Study Update
July 2022 The Unified Huntington’s Disease Rating Scale (UHDRS®) was established to routinely assess motor, cognitive, behavioral and function in Huntington disease (HD) in a standardized fashion in 1996. Since that time we have evolved. We have computers in our pocket and the Internet was invented as a great tool. We have developed and tested
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Meet the HSG Clinical Research, Inc. (HSGCR) Management Team – The HSG’s CRO
July 2022 HSG Clinical Research, Inc. (HSGCR) was established as a wholly owned for-profit subsidiary of the Huntington Study Group, LTD (HSG) to focus exclusively on delivery the best project management and core operations for clinical research in Huntington disease. Overseeing key roles in leading the HSGCR are some familiar faces with long time service
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HSG UPDATES: Seeking Self-Nominations for Upcoming EMC Investigator & Coordinator Election
July 2022 Dear HSG Investigator and Coordinator Members, Thank you for participating in the election of the Co-Chairs of the HSG Executive Membership Committee. There are additional opportunities still available, and your participation is once again requested! As announced at the HSG town hall meetings back in January and February, after the EMC Co-Chairs election,
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HSG UPDATES: HSG Executive Membership Committee Elected Co-Chairs Begin in New Role
July 2022 On May 12, 2022, Sandra Kostyk (Ohio State) and Sam Frank (Beth Israel Deaconess Medical Center) were elected to serve as Co-Chairs of the Executive Membership Committee (EMC) of the nonprofit Huntington Study Group LTD (HSG). We are pleased to now officially welcome Sandra and Sam into their new role as of July
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HSG UPDATES: Current Clinical Trials – KINECT-HD2 and PROOF-HD
—– July 2022 KINECT-HD2 is being conducted by Neurocrine Biosciences, Inc. (“Sponsor”) in partnership with the Huntington Study Group (HSG). KINECT-HD2 is an open-label, multi-center study with sites across the US and Canada and aims to investigate the long-term safety and tolerability, as well as the maintenance of effect of valbenazine for the treatment of
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We’re Back! HSG 2022 ANNUAL MEETING Returns to In-Person
July 2022 Start Booking Your Travel Now – HSG 2022 ANNUAL MEETING Returns to In-Person! Special Sessions –by invitation only(Wednesday & Thursday Morning) HSG EXPO & General Sessions(Thursday Evening & Friday) FAMILY DAYSymposium(Saturday) HSG is hosting this year’s ANNUAL MEETING in-person at the Grand Hyatt Tampa Bay in sunny Tampa, Florida on November 3-5, 2022.
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HSG UPDATES: myHDstory™ Pilot Study Celebrates Major Milestone
July 2022 The HSG is excited to share that the pilot study, Making HD Voices Heard, on the new online research platform, myHDstory™, has reached its first enrollment milestone! “The HSG is beyond thrilled by the level of participation in this first-of-its-kind study. We are extremely grateful to all the Making HD Voices Heard
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Neurocrine Biosciences Announces Positive Phase 3 Data for KINECT-HD Study Evaluating Valbenazine for Chorea Associated with Huntington Disease
SAN DIEGO, Dec. 7, 2021 – Neurocrine Biosciences (Nasdaq: NBIX) today announced positive top-line data from its Phase 3 KINECT-HD study evaluating the efficacy, safety and tolerability of valbenazine, a selective vesicular monoamine transporter 2 (VMAT2) inhibitor being investigated as a once-daily treatment in adults with chorea associated with Huntington disease (HD). View full press
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Huntington Study Group Announces A Partnership with Prilenia Therapeutics to Conduct A Global Phase 3 Clinical Study of Pridopidine in Huntington’s Disease
Rochester, N.Y. — September 17, 2020 —The Huntington Study Group (“HSG”), a world leader in clinical research for Huntington’s Disease (HD), announces a partnership with Prilenia Therapeutics, a clinical stage biotech company led by Michael R. Hayden, MD, PhD, to conduct PRidopidine Outcome On Function in Huntington’s Disease (PROOF-HD) clinical study. PROOF-HD is a global
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Huntington Study Group Launches New CME Accredited Interactive Case Study Courses
The Huntington Study Group (HSG), a world leader in spearheading research and conducting clinical trials in Huntington disease (HD), has launched a new offering to its acclaimed CME4HDTM online learning curriculum. The 2020 edition of CME4HDTM features seven interactive case studies that build upon the faculty lecture content launched last year (2019). Learners are presented with real
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HSG Announces Virtual Annual Meeting in 2020
The Huntington Study Group announced that it is taking the early and proactive step of moving this year’s annual meeting, HSG 2020: HD IN FOCUS, to a virtual experience during October 29-31, 2020. “While we will not gather together this year in-person, we have developed an interesting, novel, and innovative program that will be brought
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Publication of Clinical Guidelines for Physical Therapy in Huntington Disease
For Immediate Release: February 27, 2020 The Huntington Study Group (HSG), a world leader in spearheading research and conducting clinical trials in Huntington disease (HD), is excited to announce that the final Clinical Guidelines for Physical Therapy in Huntington’s Disease, and the final report for the Guidelines Development Group have been published in the journal
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Huntington Study Group Announces Initiation of Phase III Clinical Study of Valbenazine for the Treatment of Chorea Associated with Huntington Disease
For Immediate Release: November 14, 2019 The Huntington Study Group (HSG), a world leader in spearheading research and conducting clinical trials in Huntington disease (HD), today announced the initiation of KINECT-HD, a Phase III clinical study of valbenazine, a selective vesicular monoamine transporter 2 (VMAT2) inhibitor, for the treatment of chorea associated with HD. Chorea,
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Huntington Study Group Spotlighted on Rochester, NY Television
For Immediate Release: April 12, 2019 The Huntington Study Group (HSG) was recently featured on morning programming at two local news stations in Rochester, NY. WROC News Channel 8 (CBS affiliate) and Fox Rochester (WUHF) scheduled appearances by the HSG following the recent announcement of their 100th credentialed research site in North America. The interviews
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Huntington Study Group Achieves 100th Credentialed Research Site Milestone
For Immediate Release: March 25, 2019 The Huntington Study Group (HSG), a world leader in spearheading research and conducting clinical trials in Huntington disease (HD), is excited to announce that it has credentialed Inland Northwest Research, LLC as the 100th HSG site in North America. “On behalf of myself and our site I wish to
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The Huntington Study Group Announces New Education Committees
Rochester, NY – March 11, 2019 Today the Huntington Study Group (HSG) announced the restructuring of its Education Committee into four distinct committees aligned with the organization’s overall strategic plan for educational programs. The four committees that will lead the HSG’s current and planned education initiatives are: Member Education, Provider Education, Family Education, and Annual
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HSG Announces Launch of CME4HD 2019 – Accredited Online Education Platform
Beginning February 1, 2019, the Huntington Study Group (HSG) will offer the latest update to its popular online learning program, CME4HD. Once again, CME4HD courses will be offered free of charge thanks in part to an educational grant from Teva Pharmaceuticals. CME4HD originally began as in-person training on Huntington’s disease (HD) at the HSG’s annual
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HSG Announces Location for 2019 Annual Meeting
The Huntington Study Group announces Sacramento, California as the location for this year’s annual meeting: HSG 2019. Dr. Vicki Wheelock and her team at our UC Davis site will serve as the HSG Host Site for what has long been the organization’s hallmark event, bringing together leaders in HD research, the HD community, sponsors, and
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Dr. Nicolò Zarotti Named Recipient of the Peter Como Scholarship
The Huntington Study Group (HSG) is pleased to announce the that Dr. Nicolò Zarotti has been named recipient of the Peter Como Scholarship to attend the renowned annual meeting. Dr. Zarotti obtained his Bachelor’s and Master’s degree in Psychology in Italy, and later joined Lancaster University (UK), where he completed his PhD focused on emotional
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Huntington Study Group Welcomes New Leadership May 1
The Huntington Study Group (HSG) is pleased to announce that Andrew Feigin, MD, and Elise Kayson, MS, ANP, have been elected as the chair and co-chair, respectively, of HSG, a world-wide network of Huntington disease (HD) researchers. Both Feigin and Kayson have dedicated their careers to the clinical care of patients and families and research
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Overnight Switch from Tetrabenazine to Deutetrabenazine Safe, Trial Shows
JAMA Neurology paper published today from ARC-HD Trial People with Huntington disease-associated chorea can safely convert overnight from tetrabenazine to deutetrabenazine (brand name: Austedo), according to the results of the Alternatives for Reducing Chorea in Huntington Disease (ARC-HD) trial published yesterday in JAMA Neurology. The Phase III open-label, single-arm switch cohort of the trial was
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FDA Approves Second Drug for Huntington Disease Symptom
The U.S. Food and Drug Administration (FDA) today approved SD-809 (deutetrabenazine), the second drug approved for use in the United States to treat chorea in Huntington disease (HD), a rare, inherited neurodegenerative disorder. The approval was based on positive results from the First-HD study, a Phase 3 clinical trial which was led by the Huntington
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Vaccinex Receives FDA Fast Track Designation for VX15 Antibody for the Treatment of Huntington’s Disease
Vaccinex, Inc. today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation for VX15 as a potential treatment for Huntington’s disease (HD). VX15 is the Company’s novel clinical stage monoclonal antibody that blocks the activity of semaphorin 4D (SEMA4D), a molecule that is believed to promote chronic inflammatory responses in
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Chorea Reduced by Deutetrabenazine in Study led by HSG
JAMA publishes First-HD study People with Huntington disease experienced improvements in chorea while taking deutetrabenazine (SD-809) compared to placebo, according to a paper published today in the Journal of the American Medical Association (JAMA). Although the topline results of the trial have been released previously, the complete peer-reviewed publication about the First-HD clinical trial is
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FDA Requests More Data on Potential New Treatment for Huntington Disease
Teva Pharmaceuticals Industries announced yesterday that the U.S. Food and Drug Administration (FDA) has asked for more data on SD-809 (deutetrabenazine), which is currently under review to treat Huntington disease (HD), a rare, inherited neurodegenerative disorder. The request for more data is common when the FDA is asked to approve new medications, and this is
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SIGNAL completes enrollment in cohort A
Vaccinex Inc. completed enrollment of cohort A in its SIGNAL Clinical Trial, a randomized Phase 2 study to assess the safety, tolerability, pharmacokinetics, and efficacy of VX15/2503 in subjects at risk for or with early signs of Huntington’s Disease. Read the press release.
Teva Press Release: April 24, 2014
PRIDE-HD Study Enrolling Patients Globally to Further Evaluate Pridopidine for the Symptomatic Treatment of Huntington’s Disease – Study initiation represents significant milestone for patients with a disease with limited effective treatment options – JERUSALEM–(BUSINESS WIRE)–Apr. 24, 2014– Teva Pharmaceutical Industries Ltd. (NYSE: TEVA) announced today enrollment of the first patient in The Pride-HD study, a
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Teva & Active Biotech Press Release: November 4, 2014
Teva and Active Biotech Announce Expansion of Laquinimod Clinical Development Program with New Trial in Primary Progressive Multiple Sclerosis and First Patient Screened in Huntington’s Disease Trial 2014-11-04 ARPEGGIO and LEGATO-HD trials will further evaluate the effect of laquinimod in neurodegenerative diseases Jerusalem & Lund, Sweden – November 4, 2014 – Teva Pharmaceutical Industries Ltd.
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Auspex Press Release: December 16, 2014
Auspex Announces Positive Topline Results From Registration Trial of SD-809 for Chorea Associated With Huntington’s Disease Pivotal Phase 3 Trial Met Primary and Multiple Key Secondary Efficacy Endpoints; Favorable Safety and Tolerability Demonstrated ARC-HD Trial Shows Successful Maintenance of Chorea Control After Switch to SD-809 NDA Submission Planned by Mid-2015 Conference Call Scheduled for 4:30
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HSG Press Release: October, 2014
Announcement of CREST-E Early Study Closure October 2014 The National Center for Complementary and Alternative Medicine (NCCAM), part of the National Institutes of Health (NIH), has discontinued its study of creatine for treating the progressive functional decline that occurs in Huntington’s Disease (HD). The study, known as the Creatine Safety, Tolerability and Efficacy study (CREST-E), was being
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HSG Press Release: August 8, 2014
Announcement of 2CARE Early Study Closure August 2014 The National Institute of Neurological Disorders and Stroke (NINDS) stopped its study of coenzyme Q10 for the treatment of Huntington’s disease (HD) on July 14, 2014. The study (2CARE), conducted by the Huntington Study Group (HSG), was stopped for futility. The NINDS and the HSG acted on
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HSG Press Release: September 2012
2CARE (Coenzyme Q10 in Huntington’s Disease) Study Update September, 2012 Enrollment for the 2CARE study was closed on 25 July 2012, at which time the 609th participant joined the study. The study team has met the challenge of completing enrollment for the largest and longest clinical trial in Huntington disease (HD) to date. Forty-eight sites
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HSG Press Release: May 14, 2009
FOR IMMEDIATE RELEASE Huntington Study Group to Conduct Therapeutic Research Study in Pre-manifest Huntington’s Disease May 14, 2009 – Physicians at 10 clinical sites are taking part in a nationwide study investigating coenzyme Q10 in gene positive, premanifest Huntington’s disease. This study is known as PREQUEL (Study in PRE-manifest Huntington’s disease of coenzyme Q10 (UbiquinonE) Leading
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HSG Press Release: December 2, 2008
FOR IMMEDIATE RELEASE HSG Begins Phase IIb Study in Huntington Disease (HD) December 2, 2008 – The Huntington Study Group (HSG) is conducting a clinical trial in HD, “A multi-center, North American, randomized, double-blind, parallel group study comparing three doses of ACR16 versus placebo for the symptomatic treatment of Huntington disease” (HART) with the research
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