Press Release

Huntington Study Group® Holds 30th Annual Meeting 

Rochester, NY — November 20, 2023 — The Huntington Study Group® (HSG®), a world leader in conducting clinical trials and providing educational programming for Huntington’s disease (HD), recently held its 30th annual meeting, HSG 2023, November 2-4 in Phoenix, AZ. Hundreds of scientists, industry partners, HSG research sites and members, advocacy groups, staff, HD patients, families, and caregivers from around the world convened to hear the latest in HD research and advancements, network with colleagues, and connect with a dedicated HD community.   

This year’s sessions focused on 30 years of learnings, progress, and accomplishments since HSG’s founding and the discovery of the HD gene 1993. Presentations also discussed the changing future of clinical trials, emphasizing how the HSG is developing innovative approaches to conducting clinical trials to lessen the burden of participation. As the lead clinical research organization for industry sponsored multi-center global studies, the Huntington Study Group shared how HSG is developing novel approaches in clinical trials, including remote visits, wearable sensors, direct-to-participant virtual visits, and virtual assessment tools such as the vUHDRS™, a key assessment tool in HD trials. These approaches will enhance enrollment and participation in clinical research and ultimately accelerate treatments for those affected by Huntington’s disease.  

“It was inspirational to gather for HSG’s 30th annual meeting, reflect on our accomplishments, and discuss the important work we’re focusing on for the HD community. For three decades, HSG has been the leader in convening its global network of researchers focused in HD. The power and impact of having so many dedicated people coming together to focus on improving the lives of patients with HD continues to inspire me,” said Samuel Frank, MD, Co-Chair of HSG’s Executive Membership Committee.

This year’s meeting highlights included a record-breaking number of submitted abstracts which are published in the Journal of Huntington’s Disease. In addition, two of HSG’s founders, Drs. Ira Shoulson and Karl Kieburtz, provided a 30-year view of the accomplishments in research and discovery for Huntington’s disease which laid the foundation for the current pipeline of investigational research including novel gene therapies. Attendees had the opportunity to learn about HSG’s comprehensive education center, the “HSG Brainery,” which will streamline the education, certification, and credentialing opportunities the organization provides to researchers, clinicians, healthcare partners, community members, and persons impacted by HD.

The inaugural session of ENGAGE-HD (Educate, Nurture, Gather, Acquire knowledge, Grow, and Excite professionals about Huntington’s disease), a groundbreaking program committed to finding and educating the next generation of HD researchers, was held on Saturday. This effort was developed and is being led by longtime HSG members Erin Furr Stimming, MD, Jee Bang, MD, MPH, and Jody Corey-Bloom, MD, PhD.

Saturday also marked the return of Family Day, an annual day-long program dedicated to patients, families, caregivers, and the local HD community. This year’s sessions were led and developed by Martha Nance, MD, Chair of HSG’s Family Education Committee, along with a team of Phoenix-area healthcare providers from Barrow Neurological Institute. One of this year’s keynote speakers at Family Day was Erin Paterson, author of the memoir, All Good Things. Erin spoke about her journey with genetic testing, infertility, and the search for happiness. Allie LaForce, TNT Sports reporter and one of the founders of HelpCureHD, a not-for-profit organization dedicated to providing grant funding for PGT-IVF (pre-implantation genetic testing in-vitro fertilization), shared her experience with genetic testing and PGT-IVF during this year’s Spotlight on Genetics panel session.

“HSG is dedicated to accelerating treatments that make a difference, and the efforts we were able to showcase this year in support of our mission are a testament to the strength of our network,” said Shari Kinel, CEO of HSG. “We are so proud of our accomplishments and are hopeful that we’ll have even more successes to share at next year’s meeting. Until then, we will continue doing everything we can to improve the lives of people impacted by HD through research, education, and collaboration.”

Planning for HSG 2024 is underway and a location will be announced soon.

About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent. Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.   

About Huntington Study Group / HSG Clinical Research, Inc.
The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts clinical trials through the world’s first and largest collaborative network with thousands of members at more than 130 HSG credentialed research sites worldwide. HSG conducted all three pivotal clinical trials that led to the only FDA-approved medications for Huntington’s disease associated chorea. The organization is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org.

To read the full press release, click here.

Huntington Study Group® Observational Pilot Study Shows HSG’s myHDstory®  Platform Reaches the Unreachable

Rochester, NY, October 11, 2023 – The Huntington Study Group® (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc. (HSGCR), a world leader in conducting clinical trials for Huntington’s disease (HD), today announces that the pilot observational study on their innovative online direct-to-patient research platform, myHDstory®, is complete with unprecedented topline results.

The pilot study, Making HD Voices Heard, not only achieved its goal of capturing the patient voice to allow for a better understanding of how HD patients experience their symptoms and how the disease affects their wellbeing, but also indicates that HSG’s myHDstory® platform successfully reaches participants who don’t usually take part in research. The results show that most participants in the study had never participated in any trials or studies. In addition, there was much higher racial and geographical diversity seen in participants than in any other HD study.

Karen Anderson, MD, Professor of Psychiatry & Neurology at Georgetown University and longtime HSG member, was the study’s Principal Investigator. Dr. Anderson stated, “By allowing participation in research anytime, anywhere, HSG has developed a tool that breaks down some of the barriers to research participation, allowing for a better understanding of HD and the potential for improved data from patient reported outcome measures. The high participation rate, the racial and ethnic diversity, and the relatively young age of myHDstory® participants are meaningful.”

Making HD Voices Heard successfully reached over 400 participants in the US reporting their lived HD experience using the HD-Patient Report of Problems (HD-PROPTM), a tool created by Ira Shoulson, MD and developed by Grey Matter Technologies and Modality.ai to interpret and classify symptoms reported by patients in their own words.  Dr. Shoulson, HSG founder, also served as the study Co-Principal Investigator.

“HSG is thrilled by the results of the pilot study and the team is working diligently on developing the next two studies for the myHDstory® platform. These will include longitudinal capabilities so we can measure changes over time. We’re grateful to the study participants who devoted their time and energy to this study and whose dedication supports our shared mission of accelerating treatments that make a difference,” said Shari Kinel, HSG CEO.

A conference call is scheduled in mid-October to provide updates to the Making HD Voices Heard study participants.

An abstract detailing the pilot study’s results has been accepted for a poster presentation at Huntington Study Group’s annual meeting in Phoenix, AZ this November. To learn more or register for the meeting, visit huntingtonstudygroup.org/hsg-2023/. For more information about myHDstory® or to sign up to receive updates about future studies, visit huntingtonstudygroup.org/myHDstory/.

About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent.  Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered. 

About Huntington Study Group / HSG Clinical Research, Inc.
The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts clinical trials through the world’s first and largest collaborative network with thousands of members at more than 130 HSG credentialed research sites worldwide. HSG conducted all three pivotal clinical trials that led to the only FDA-approved medications for Huntington’s disease associated chorea. The organization is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit huntingtonstudygroup.org.

To view the full Press Release, click here

 Huntington Study Group Welcomes FDA Approval of New Drug for Chorea in Huntington’s Disease 

Rochester, New York, August 18, 2023 – The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in clinical trials for Huntington’s disease (HD), today shares that the Phase 3 pivotal KINECT®-HD study conducted by HSG in collaboration with Neurocrine Biosciences, Inc. resulted in the U.S. Food and Drug Administration’s (FDA) approval of Neurocrine’s drug, valbenazine, for the treatment of chorea associated with HD. HSG has been instrumental in all three pivotal clinical trials that have led to FDA approved medications for Huntington’s disease.

Chorea, the hallmark motor symptom of HD, described as irregular, excessive involuntary movements can severely negatively impact day-to-day life. Dr. Erin Furr Stimming, Neurologist at UTHealth Houston, longtime HSG member, and Principal Investigator of the KINECT-HD study said, “It is incredibly important to have additional therapeutic options for people with HD, and we are extremely grateful to our HD study participants for helping us make this new treatment available.”

The KINECT-HD study met primary and secondary endpoints, showing that valbenazine, a novel vesicular monoamine transporter 2 (VMAT2) inhibitor, reduced HD-related chorea symptoms as early as two weeks after the initial dose. In KINECT-HD, valbenazine was also well tolerated. Andrew Feigin, MD, Chief Medical Officer of HSG said, “We are immensely proud of our collaboration with Neurocrine that led to this important study.”

KINECT-HD was a randomized double-blind, placebo-controlled study with 128 participants at 46 HSG sites across North America conducted by Huntington Study Group in collaboration with Neurocrine Biosciences, Inc. and Clinical Trials Coordination Center (CTCC)/Center for Health + Technology (CHeT) at the University of Rochester Medical Center. The study also included the use of a novel patient reported outcome measure, Huntington’s Disease Health Index (HD-HI), and a sensor sub study. The complete results of the study were published in The Lancet Neurology in June 2023.

Shari Kinel, CEO of HSG said, “We would like to thank the study participants, their families, and HSG sites for their support of KINECT-HD.”

Neurocrine issued a press release today announcing the FDA approval. The press release can be found on their website at https://www.neurocrine.com/news-and-media/.

Neurocrine Biosciences, Inc. will be providing an update on the KINECT-HD studies at HSG’s Annual Meeting on November 2-4, 2023, in Phoenix, Arizona. KINECT®-HD2 is an ongoing open-label study to evaluate the long-term safety and tolerability, as well as the maintenance of effects of INGREZZA in patients with HD chorea.

About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent. Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.

About Huntington Study Group / HSG Clinical Research, Inc.
The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts clinical trials through the world’s first and largest collaborative network with thousands of members at more than 130 HSG credentialed research sites worldwide. HSG is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org.

About Clinical Trials Coordination Center at University of Rochester Medical Center
CTCC specializes in the development, management, and conduct of clinical research studies and provides a full range of research and clinical trial management support services that facilitate the conduct of clinical research from study concept through data analysis, publication, and FDA approval. Over the past 30 years, the CTCC has managed the conduct of more than 135 clinical research studies with 50 sponsors (government, industry & private) that enrolled over 40,000 research participants in US, Canada, Europe, New Zealand, and Australia.

To read the full press release, click here.

HSG and HD-CAB Collaborate to Provide Global Patient Advisory Board

Rochester, NY, March 30, 2023 — The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in conducting clinical trials for Huntington’s disease (HD), recently collaborated with Huntington’s Disease – Community Advisory Board (HD-CAB) to provide a Global Patient Advisory Board on behalf of Annexon Biosciences, Inc. Annexon is a clinical-stage biopharmaceutical company whose focus is on developing a pipeline of novel therapies for patients with disorders of the body, brain, and eye that are caused by improper regulation of the body’s complement system1.

The Advisory Board (Ad Board), held on November 30, 2022 in Jersey City, New Jersey, USA, was a six-hour session that included eleven HD-CAB advocate members from the US, Canada, Scotland, France, Italy, Sweden, Pakistan, and India, who convened to share with Annexon their stories and viewpoints and to discuss the challenges HD trial participants and their families face. One of the goals of the Ad Board was to encourage open communication about how trial sponsors and Clinical Research Organizations (CROs) can better support HD families before, during, and after clinical trials. This conversation was led by Astri Arnesen, Chair of HD-CAB and President of the European Huntington Association. Dr. Christopher Ross, HSG’s Chief Scientific Officer and Dr. Jody Corey-Bloom, Neurologist at UC San Diego and longtime HSG member, facilitated a discussion regarding Annexon’s scientific rationale in HD and planned trial design.

“HD-CAB represents the voice of the global HD community. Consisting of HD family members from six continents and 20 countries, our aim is to ensure that critical factors aren’t overlooked in the design and implementation of clinical trials. It was a pleasure to work with HSG and Annexon as they actively listened to the real-world experience of HD-CAB advocates, adjusted course as appropriate and committed to doing so on an ongoing basis,” said Astri Arnesen.

“I would like to thank the HD-CAB advocates as well as the HSG and HD-CAB management teams for the expertise and actionable next steps shared at the Global Patient Advisory Board,” said Peter Collins, VP, Global Program Team Lead of the Neurodegeneration Franchise at Annexon Biosciences. “We look forward to continued collaborations with leading patient organizations, such as HD-CAB and HSG, to ensure Annexon consistently engages with, and incorporates feedback from, the patients and families we seek to serve.”

HD-CAB recently completed a follow-up International Ad Board on behalf of Annexon Biosciences at the HYDO International Congress in Glasgow, Scotland in March 2023. HSG, HD-CAB, and Annexon Biosciences are continuing to discuss opportunities for future collaborations.

Dr. Ross noted, “HSG is always looking for innovative ways to support and engage the HD community and to make sure their voices are heard. We found this collaborative effort to be truly meaningful and hope this opportunity is just one of many that we will have the privilege of participating in. Our team is grateful to HD-CAB for their invaluable contributions and to Annexon for enabling our organizations to make this important meeting come to fruition. It was a great success.”

If you’re interested in learning more about collaboration opportunities, please contact info@hsglimited.org.

1 The body’s complement system is part of the immune system. It is responsible for defending cells and tissues from infections and diseases.

About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent. Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.

About Huntington Study Group / HSG Clinical Research, Inc.
The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts clinical trials through the world’s first and largest collaborative network of over 800 experts in Huntington’s disease at more than 130 HSG credentialed research sites worldwide. HSG is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org.

About HD-Community Advisory Board
HD-Community Advisory Board (HD-CAB) is a coalition of partners from the European Huntington Association, the International Huntington Association, and the Huntington’s Disease Youth Organization whose mission is to represent the voice of the global HD community and provide HD community experience to regulators, industry, researchers, and governing bodies. HD-CAB provides the unique expertise of living with HD to stakeholders relevant for therapeutic development. For more information, visit www.hd-cab.org.

Click here to view the full press release.

Huntington Study Group and CHDI Foundation Collaborate on Enroll-HD

Rochester, NY and New York City, NY, July 25, 2023 — HSG Clinical Research, Inc. — the Huntington Study Group’s clinical research organization (CRO) and wholly owned subsidiary (collectively referred to here as HSG) — has begun providing CRO services for CHDI Foundation’s Enroll-HD observational study and clinical research platform in the USA and Canada. 

“CHDI has long supported and worked with the HSG as a clinical investigator-facing network of healthcare professionals dedicated to Huntington’s disease,” said Robi Blumenstein, President of CHDI Management. “HSG is very familiar with the HD clinical sites throughout North America and, with the establishment of its clinical research arm, HSG Clinical Research, it was only natural that we would turn to HSG as a CRO for Enroll-HD. HSG brings exceptional domain knowledge and continuity to Enroll-HD and the studies and trials it supports, and we look forward to the continued expansion of this relationship over time.”

Enroll-HD is a clinical research platform and the world’s largest observational study for Huntington’s disease families that serves as a resource for the entire HD community, including families, clinicians, researchers, advocates, and the vitally important engagement of pharma and biotech companies developing novel therapeutics. Currently, the Enroll-HD clinical database comprises more than 30,000 participants from around the world at more than 155 clinical sites in 23 nations.

CHDI and HSG will leverage their expertise and innovation to continue gaining knowledge and insight into the natural history of HD, combine their strengths in research, clinical expertise, and study execution to ensure the ongoing success of Enroll-HD, and work together to accelerate therapeutic development to make a difference for those affected by Huntington’s disease.

Shari Kinel, CEO of Huntington Study Group, noted, “CHDI is an incredible organization and HSG could not be more excited to work with them on this important study. Our organizations have a shared commitment to improving the lives of individuals and families affected by HD, and we are confident that our joint efforts will lead to meaningful outcomes. We are already looking forward to future collaboration opportunities.”

Learn more about Enroll-HD, including how to participate and how it can help your research. 

If you’re interested in learning more about opportunities to collaborate with HSG, please contact info@hsglimited.org.

About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent.  Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.

To read the full press release, click here.

Huntington Study Group Announces Positive Topline Results for Virtual Unified Huntington’s Disease Rating Scale® (vUHDRS®) Study

The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in conducting clinical trials for Huntington’s disease (HD), today announces positive topline results from its Virtual Unified Huntington’s Disease Rating Scale® (vUHDRS®) observational study. This novel, innovative study assessed the reliability of virtual use of the HSG’s standard assessment tool, the Unified Huntington’s Disease Rating Scale® (UHDRS®).

The analysis of the data was consistent with key portions of the scale showing excellent reliability. Specifically, the modified motor portion and the primary outcome measure of stage, the Total Functional Capacity, had high intraclass correlation coefficients (ICCs). In addition, all other functional, cognitive, and behavioral sections had ICCs consistent with excellent reliability. The vUHDRS® study may assist with the development of remote and hybrid trials thereby reducing participant burden and increasing availability of data.

The vUHDRS® study, funded and sponsored by Huntington Study Group, was inspired by the necessity to break down barriers, and allow remote assessments in HD trials. The COVID-19 pandemic accelerated vUHDRS® development. The study was conducted at 16 HSG sites in the United States. Fifty-nine participants completed the study with about half using their own devices and the other half using HSG-provided tablets and portable Wi-Fi connections.

“These results are exciting for clinical research and patient communities. Clinical research in Huntington’s disease is one step closer to being more accessible to a larger population and offers the opportunity for more access to remote care in HD,” said Samuel Frank, MD, Associate Professor of Neurology and Director of the HDSA Center of Excellence at Beth Israel Deaconess Medical Center, and Principal Investigator of the vUHDRS® study. “The lessons learned and data from this study supports our belief that this key endpoint for HD studies can be effectively delivered in a virtual setting, thereby improving overall care and development of treatments for our patients and families impacted by HD.”

The vUHDRS® results will be presented at the International Congress of Parkinson’s Disease and Movement Disorders® in Copenhagen, Denmark, August 27-31, 2023, and at HSG’s annual meeting in Phoenix, AZ, November 2-4, 2023.

About the Unified Huntington’s Disease Rating Scale (UHDRS®)
The HSG developed and owns the UHDRS® which was established in 1996 to assess motor, cognition, behavior, and function in patients with Huntington’s disease in a standardized manner. The UHDRS® in part or in whole is commonly used as the primary endpoint in many HD trials. To learn more about the tool including licensing information, visit https://huntingtonstudygroup.org/uhdrs/.

About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent. Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.

About Huntington Study Group / HSG Clinical Research
The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts clinical trials through the world’s first and largest collaborative network with thousands of members at more than 130 HSG credentialed research sites worldwide. HSG is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org.

To read the full press release, click here.

Huntington Study Group Achieves Last Patient Last Visit for Its Observational Study to Test Virtual Use of the Unified Huntington’s Disease Rating Scale®

Rochester, NY – May 16, 2023 – The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., announces an important milestone in the novel observational study Virtual Unified Huntington’s Disease Rating Scale (vUHDRS™). The last participant completed the last visit, marking study completion.

The purpose of this study is to determine the reliability of administering all sections of the Unified Huntington’s Disease Rating Scale (UHDRS®) virtually compared to in-person for clinical and clinical trial use. The UHDRS® is the gold-standard in assessing motor function, cognitive function, behavioral abnormalities, and functional capacity in Huntington’s disease (HD). Since the tool was originally developed in 1993, the HSG-owned instrument has been used in part or in total as the primary endpoint in many HD trials. The changing face of clinical trials is prompting the need for reliable tools for assessing and interacting with patients and research participants remotely. This need became clearer and more urgent during the COVID-19 pandemic, accelerating HSG’s development of this study.

vUHDRS™ has the potential to positively impact care delivery and clinical trial operations as part of remote and hybrid trials, effectively removing some of the barriers people face when participating in research studies. This study could also increase data availability, frequency of data collection and could enhance clinical care.

Samuel Frank, MD, Associate Professor of Neurology, Director of the Huntington’s Disease Society of America Center of Excellence at Beth Israel Deaconess Medical Center, and Principal Investigator of the vUHDRS™ study, said “It’s exciting to be part of this critical study that will enhance future clinical trials in HD. We couldn’t do any of this without an incredible team and the help of our dedicated participants for whom we are so thankful.”

The vUHDRS™ study was conducted at 16 HSG sites across the US, where 60 subjects with motor manifest HD were followed over approximately six weeks through a combination of in-person and remote visits. The study team is beginning to analyze the data and hopes to announce results in third quarter 2023.

More information about this study will also be presented at HSG’s 30th Annual Meeting in November. To learn more about the meeting, including sponsorship opportunities, click here.  
 
About Huntington’s disease 
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent.  Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.

About Huntington Study Group / HSG Clinical Research, Inc.  
The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts clinical trials through the world’s first and largest collaborative network of over 800 experts in Huntington’s disease at more than 130 HSG credentialed research sites worldwide. HSG is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org. 

To read the full press release, click here.

Neurocrine Biosciences Announces Publication of Full KINECT™-HD Phase 3 Study Results of Valbenazine for the Treatment of Chorea Associated with Huntington’s Disease in The Lancet Neurology 

  • Statistically Significant Improvement in Chorea Associated with Huntington’s Disease Seen as Early as Week 2
  • Chorea Improvement Supported by Statistically Significant Clinical Global Impression of Change (CGI-C) Response Status and Patient Global Impression of Change (PGI-C) Response Status Scores at Week 12
  • First Phase 3 Study to Implement Huntington’s Disease Health Index (HD-HI), a Patient-Reported Outcome Measure, Showed Reduced Disease Burden as Reported by Patients Receiving Valbenazine versus Placebo
  • Supplemental New Drug Application (sNDA) Filed, with Prescription Drug User Fee Act (PDUFA) Target Date Set for August 20, 2023

Neurocrine Biosciences, Inc. today announced that the complete study results from its Phase 3 KINECT™-HD study investigating valbenazine for the treatment of chorea associated with Huntington’s disease (HD) has been published in The Lancet Neurology online edition and will appear in the June 2023 print issue. The study met its primary and secondary endpoints, demonstrating a reduction in chorea symptoms associated with HD and improvement of overall chorea severity as noticed by clinicians and patients, with improvement seen as early as Week 2 of the initial dose in the 12-week study.
 
The KINECT-HD randomized double-blind, placebo-controlled Phase 3 study was conducted with 128 participants at 46 Huntington Study Group (HSG)–credentialed sites in North America.

The primary endpoint was a reduction in severity of chorea, the cardinal motor feature in HD, as measured by change in the HSG-developed Unified Huntington’s Disease Rating Scale (UHDRS®) Total Maximal Chorea (TMC) score from baseline to the average score at weeks 10 and 12. The TMC score is part of the motor assessment of the UHDRS that measures chorea. 
 
To read the full press release, click here.

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. This year is particularly special, as the HSG will be honoring its 30th year as an organization, along with the 30th anniversary of the HD gene discovery.
 
“We are proud of the work HSG has completed over the past 30 years. As Co-Chairs, we look forward to a meaningful, productive and promising future for our patients and families impacted by HD,” said Sam Frank, MD and Sandra Kostyk, MD, PhD, Co-Chairs of HSG’s Executive Membership Committee.
 
The three-day long Annual Meeting provides an excellent forum for scientists, industry partners, HSG research sites (largely from academic institutions), advocacy groups, members, staff, HD patients, families, and caregivers around the world to present and learn about new findings for Huntington’s disease treatments. Through the Annual Meeting, the HSG facilitates programs to provide the latest updates on current HD clinical trials, scientific advancements, and industry developments. Most importantly, the event provides opportunities for connection, networking, and collaboration. Attendees generally report leaving HSG’s annual meetings feeling energized, inspired, and full of hope and this year’s meeting should be equally impactful.
 
“I look forward to attending HSG’s event each year and consider it a very useful opportunity to hear from and interact with HD thought leaders, and to make valuable connections,” said Dietrich Haubenberger, MHSc, MD, Executive Medical Director for Clinical Development at Neurocrine Biosciences.
 
This year’s agenda is being planned by the newly formed Executive Membership Committee and the Family Day Planning Committee. Two full weekdays will be devoted to scientific updates and learning opportunities while Saturday, Family Day, will be dedicated to patients, families, caregivers, and the local HD community.
 
Shari Kinel, JD, CEO of Huntington Study Group noted, “We’re looking forward to everyone coming together to connect and participate in a full range of scientific programming and educational activities. We want to honor the incredible network of people who continue to support our mission of accelerating treatments that make a difference for Huntington’s disease.”

More details and registration opportunities will be coming in the next few months.
If you’d like to sponsor HSG’s 30th Annual Meeting, please click here for details.

About Huntington’s disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent. Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.

About Huntington Study Group / HSG Clinical Research, Inc. 
Founded in 1993 in Rochester, NY, the Huntington Study Group (HSG) is a not-for-profit organization composed of the world’s first and largest collaborative network of over 800 experts in Huntington’s disease at more than 130 HSG credentialed research sites worldwide. HSG Clinical Research, Inc., a wholly owned subsidiary of the HSG, is a full-service clinical research organization that specializes in conducting HD trials. The HSG also offers educational services for healthcare professionals and care providers on treating patients with HD. For more information, visit www.huntingtonstudygroup.org.

Click here to view the full press release.

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 around the world.

At this year’s meeting, attendees heard about exciting clinical trial advancements including gene therapies, biomarkers (e.g., PET Imaging of Synapses and Mutant Huntingtin), and updates regarding the development and progress of novel tools being used to improve research and care (e.g., HSG’s® and myHDstory™ observational studies). These presentations and other inspiring talks raised hope for the whole HD community of patients, families, clinicians, and researchers.

“The plenary sessions at the Huntington Study Group 2022 Annual Meeting in Tampa were truly some of the best I can remember! I was particularly excited by the session on imaging and tissue biomarkers and also the Innovator’s Forum, which brought together a large number of early-stage therapeutics companies focused on preclinical drug development for HD,” said Jody Corey-Bloom, MD, PhD, Neurologist at UC San Diego and member of HSG.

Christopher Ross, MD, PhD Chief Scientific Officer at HSG, said “Interestingly, small molecules (i.e., drugs that can be taken orally) seem to be undergoing a bit of resurgence. It’s great to see that there are studies of so many approaches to treating HD.”

At the meeting, HSG announced more details about their expanded clinical trial operations. The organization offers a full suite of Clinical Research Organization (CRO) services including Global Trial Operations, Advisory Boards, and Protocol Design and Review. For 29 years, the HSG has been leveraging the expertise, innovation, and commitment of their members and staff to set the gold standard for running HD clinical trials. The HSG’s dedication to its mission – seeking treatments that make a difference – has never been stronger. 

Shari Kinel, JD, CEO of Huntington Study Group noted, “After holding the meeting remotely for the past two years due to COVID, the joy and excitement we all felt from being back together in person was palpable. We are truly grateful to all of our attendees, the HD community, and to everyone who helped make this event a remarkable success.”

Next year, HSG will celebrate its 30th Anniversary at their 2023 Annual Meeting.

About Huntington’s Disease
Huntington’s Disease (HD) is a hereditary neurodegenerative disease characterized by a movement disorder, psychiatric difficulties, and cognitive changes, usually beginning in middle adult life. About 40,000 people in North America have HD, and another 200,000 are considered “at risk” for inheriting the illness because they have (or had) a parent with HD.
 
About Huntington Study Group / HSG Clinical Research
Founded in 1993 in Rochester, NY, the Huntington Study Group (HSG) is a not-for-profit organization comprised of the world’s first and largest collaborative network of experts in Huntington’s Disease whose mission is to seek treatments that make a difference for those affected by HD. HSG Clinical Research, Inc., a wholly owned subsidiary of the HSG, is a full-service clinical research organization that specializes on conducting trials in HD. There are over 800 HD experts at more than 130 HSG credentialed research sites worldwide. The HSG also offers educational services like CME4HD™ for healthcare professionals and care providers on treating patients with HD. For more information, visit www.huntingtonstudygroup.org.

View full press release.

1 2