HSG Updates

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)

General Sessions
(Thursday Evening & Friday)


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.

Learn About the Latest HD Research
Clinical Trial Updates
Inspirational Speakers!

Online registration is now open!

Please visit https://huntingtonstudygroup.org/hsg-2022/ for additional details and registration links. Here is what to expect this year – View HSG 2022 Agenda

Book Flights ASAP as flight costs are increasing.

Please contact Kristin Strazdins at Kristin@hsglimited.org for any questions regarding meeting logistics or travel and lodging.


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 many interventions since that time, but all research studies rely on assessments completed in person. The pandemic and other life events highlighted the need to assess patients and research participants remotely.

The virtual UHDRS® (vUHDRS®) study, funded and sponsored by the Huntington Study Group (HSG) will determine the reliability of administering all sections of the UHDRS® virtually compared to in-person for clinical care and clinical trial use. The vUHDRS® study may assist with the development of hybrid trials thereby reducing participant burden. In addition, consistent TeleVisit use of the vUHDRS® could enhance clinical care.

The study will be conducted at about 15 HSG sites in the United States. The study is about to start. We will be looking for about 60 participants who have motor manifest HD so that we can assess their symptoms in person and through a TeleVisit.

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 participants,” said Dr. Karen Anderson, Professor of Psychiatry and Neurology at Georgetown University Medical Center and Principal Investigator of the Making HD Voices Heard study. “We hope the feasibility data and patient reports collected from this pilot will inform future direct-to-participant (DTP) research.  It is our goal to engage larger segments of the Huntington disease (HD) population, family members, and caregivers, improving HD care and treatments.”

The HSG collaborated with technology companies Grey Matter Technologies, Inc. and Neurotargeting, LLC to make this novel online research study accessible for qualifying United States residents to access. The myHDstory™ platform is intended to capture longitudinal data on Huntington disease from the patient perspective, giving voice to consenting adults to report what they feel, experience, and how they function with Huntington disease. This research platform is a significant opportunity for the HSG to serve the HD community because myHDstory enables collection of data directly from patients, in their own words, about their experiences living with HD, without in person study visits.
“We would like to thank the Griffin Foundation, NJ Cure HD, Ira Shoulson, Elise Kayson-Rubin, and Richard Rubin for their support of myHDstory™,” said Shari Kinel, Chief Executive Officer of the Huntington Study Group. “The HSG would also like to extend our appreciation to advocacy groups that helped raise awareness of the pilot study, including Help 4 HD, Huntington’s Disease Youth Organization (HDYO), HD Reach, and Huntington’s Disease Society of America (HDSA).”

For more information about myHDstory, visit https://huntingtonstudygroup.org/myhdstory/

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, there is to be an election for the following two positions on the Executive Membership Committee:

  • One (1) HSG CREDENTIALED INVESTIGATOR, who has been credentialed for at least five (5) years and participated in at least one (1) HSG clinical trial.
  • One (1) HSG CREDENTIALED COORDINATOR, who has been credentialed for at least five (5) years and participated in at least one (1) HSG clinical trial.

These individuals will join the other members on the Executive Membership Committee and serve in by aiding the nonprofit arm of the HSG to achieve in its mission driven goals.

The self-nomination form for HSG Credentialed Investigators and Coordinators to run for the open positions on the Executive Membership Committee is now open.

Submit your self-nomination herehttps://hsg.memberclicks.net/emc-inv-coord-self-nomination-2022

Be a part of the next generation of the Huntington Study Group and consider nominating yourself by August 31, 2022.


Sandra Kostyk & Sam Frank
Co-Chairs, HSG Executive Membership Committee

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 chorea associated with HD. Participation in this study will last up to approximately 162 weeks, including up to 4 weeks (28 days) of screening, up to 156 weeks of treatment (about 39 months or approximately 3 years), and a final study visit 2 weeks (14 days) after stopping study drug. The entire study consists of up to approximately 22 study visits. The enrollment goal is to reach approximately 150 participants. KINECT-HD2 was recently amended to include participants on stable background treatment of antipsychotic medication, and is currently open to enrollment.

We are incredibly grateful to all the study participants, study sites, referring sites, Sponsor and study teams for their continued dedication to the study.

If you know of any potential participants, please contact Jody Goldstein by phone (760-845-2105) or email (jody.goldstein@hsglimited.org).

For further information about Neurocrine Biosciences, Inc. and Valbenazine click on links below.

May 12, 2022
Neurocrine Biosciences Receives Orphan Drug Designation for Valbenazine as a Treatment for Chorea Associated with Huntington Disease

April 1, 2022 Press release (KINECT-HD)
Neurocrine Biosciences Presents Phase 3 Data for KINECT-HD Study Evaluating Valbenazine for Chorea Associated with Huntington Disease at AAN 2022

PROOF-HD is a Phase 3, Randomized, Double-Blind, Placebo-Controlled, Parallel Arm, Multicenter Study Evaluating the Efficacy and Safety of Pridopidine in Patients with Early Stage of Huntington), is sponsored by Prilenia Therapeutics and led by the Huntington Study Group in collaboration with TFS, Clinical Trials Coordination Center (U Rochester), and several partner providers. The study is being conducted at 59 sites in North American and Europe, and enrollment was completed in October, 2021. Participant retention has been excellent with approximately 95% of enrolled participants remaining in the study. All active participants have reached the halfway point in the main (double-blind) portion of the study. A number of participants have completed the main study and have rolled over into the Open Label Extension (OLE). The next major milestones include the main study database lock planned for Q1 2023.

The global study team is excited to meet in person at upcoming meetings – the PROOF-HD European and North American Investigators and Coordinators will be meeting at the upcoming EHDN 2022 and HSG 2022 meetings in September and November, respectively.

On behalf of Prilenia and the study team, we are grateful for the collaborative effort of the PROOF-HD study sites, and most importantly, the dedication and commitment of all study participants and their families.

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 1, 2022.

This is an exciting and evolving time for the organization. While the HSG launched a wholly-owned for-profit entity in HSG Clinical Research, Inc. (HSGCR) dedicated exclusively to clinical research operations, the nonprofit will continue to rely on our membership to drive its mission driven focus. That mission includes providing premier educational content in Huntington disease (CME4HD™), ongoing training for HSG members (HSG Member Ed), credentialing researchers for clinical trials, and leading innovations in HD research through efforts like the vUHDRS®.

“In their role as Co-Chairs of the EMC, Sandra and Sam will spearhead initiatives to further enhance our core mission as a nonprofit,” said Shari Kinel, CEO of the Huntington Study Group. “We look forward to their collaborative leadership with our members and staff to ensure the HSG continues to make a difference for the entire HD community.”

The new HSG EMC Co-Chairs will begin their term with an orientation to the overall governance structure of the organization, working toward nominating candidates for open EMC positions and filling open HSG subcommittee positions.

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 on behalf of the HSG.

Continuing in key realigned operational roles as full-time employees of the organization are:

Shari Kinel – Chief Executive Officer

Shari joined the HSG in 2009 and led the formation of the HSG as a standalone not-for-profit 501(c) organization as well as the formation of HSG Clinical Research, Inc – a for-profit wholly owned subsidiary of the HSG. She oversees the overall operations and leads planning and implementation of strategic initiatives. Shari is involved in helping conduct HD clinical trials including the pivotal trial that resulted in the second FDA-approved drug for HD. Since joining HSG, Shari has served on HD clinical trial steering committees, HD trial project teams and has worked with many HD organizations and partners on special programs. Shari is an attorney who started her career at the government in Washington, DC and then transitioned to financial services until she found her passion working towards finding treatments for people affected by HD.

Anne Van Dusen – Chief Operating Officer

While assisting in nearly all aspects of HSG operations and mission driven programs, with the inception of HSGCR, Anne assumed the role of Chief Operating Officer and lends organizational oversight to both the the HSG and HSGCR to ensure efficiency, efficacy and compliance in all business aspects of the organization. Anne has been a valued member of the HSG for over 5 years, with a expansive background in Finance, Compliance and Quality within the Heathcare Industry for 20+ years.

Michael Lentine – Chief Financial Office

Mike has over a decade of experience in Finance and Research Administration. In his current role, he provides financial oversight for the Huntington Study Group (HSG). He develops budgets, negotiates contracts, oversees accounting operations, and plays a role in driving forward the HSG’s strategic plan. Mike holds an MBA from the University of Rochester’s Simon School of Business.

Joining HSGCR in new roles for the organization are the following:

Andrew Feigin – Chief Medical Officer (CMO)

Prior to the incorporation of HSGCR as its wholly-owned subsidiary, Andy served in many capacities for the HSG, including most recently as the elected Chair of the HSG. He has been involved in HD clinical research since his participation in the Venezuela Collaborative Research Study beginning in 1993, and his independent research has focused on the development of novel imaging biomarkers for use as outcome measures in HD clinical trials. Andy has served in many roles for multicenter HD clinical trials including as principal investigator (SIGNAL, PROOF-HD), co-PI (LEGATO-HD), medical monitor, DSMB member and Chair, steering committee member, as well as serving as a site PI on numerous HD clinical trials. Now, as CMO, his primary role will be to provide leadership and direction for HSGCR’s pipeline of clinical development programs and clinical trials in HD and other rare diseases.

Elise Kayson – Vice President, Clinical Operations

Elise has been actively involved in the HSG in various roles since its inception, and recently joined HSGCR as a full-time employee. This follows the conclusion of her role serving with Andrew Feigin, MD as elected Co-Chair of the Huntington Study Group. Elise has more than two decades of clinical research experience in HD and other rare disorders across both pharmaceutical industry and academia. In her role as VP of Clinical Operations, Elise will provide clinical trial design strategic guidance and leadership and oversight for the execution of all phases of clinical trials ensuring they are completed in a timely manner, to budget and regulatory standards. She will ensure the efficiency, effectiveness, and quality of HSGCR’s operational aspects of development programs and project management for all clinical trials within HSGCR.

Christopher Ross – Senior Director of Scientific Affairs

While leading the HSG Scientific Advisory Council, driving the panel discussions of the popular Innovators Forum at the HSG Annual Meeting, and developing Scientific Advisory Boards and other scientific advice for sponsors, Chris’s role as Chief Scientific Officer has been aligned under HSGCR on the leadership team. He will continue working to support the scientific and clinical trial growth strategies of HSGCR and also continue with scientific advice for other HSG activities.