Press Releases

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.

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.

“The importance of this research survey is the real-world sampling of HD care across all types of medical practices in the United States and how it shows us the inequality in care levels with different practice types. This is a call for us to increase outreach and education to those practices who are already seeing HD patients to improve care and access to specialty services,” said Lauren Seeberger, MD, HD-Net Principal Investigator and Associate Professor at the University of Colorado.

The HSG collaborated with the University of Colorado, University of California San Diego, Genentech, Inc., and RAND Corporation, to make this novel survey accessible for qualifying United States residents to access. The HD-Net is obtained a clearer understanding of current care structure and delivery of care through a survey of representative US physicians treating HD patients. The survey included 40 closed-ended evaluative items and one open-ended item to a sample of 339 US practices. Unique to this survey was the inclusion of non-specialists. Findings concluded that HD care was inconsistently applied across the US. Practices led by neurologists trained in movement disorders, and higher HD volume practices, tended to be better equipped to provide multi-disciplinary staffing and procedures as compared to those with fewer numbers of HD patients.

“We would like to thank Lauren Seeberger, MD; Jody Corey-Bloom, MD, PhD; Michael O’Brien; Diana Slowiejko, PharmD, PhD; Danielle Schlang, MA; Marika S. Booth, MS; Beth Ann Griffin, PhD; and Peggy G. Chen, MD, MSc, MHS for their work on HD-Net,” said Shari Kinel, JD, Chief Executive Officer of the Huntington Study Group. “The HSG would also like to extend our appreciation to Diana Slowiejko, PharmD, PhD, the Principal Med Science Director of Genentech, for her pivotal role in project development and support.

Acknowledgment
Acknowledgment to the HD-Net Steering Committee (Donald Higgins MD, Samuel S. Stratton VA Medical Center, Albany, New York; Joseph Jankovic MD, Baylor College of Medicine, Houston, Texas; Jamie Levey, MBA, CHDI Foundation; Karen Marder MD, MPH, Columbia University Medical Center, New York, New York; Julie Parsons MD, Children’s Hospital Colorado, Aurora, Colorado; Abdul R Shaikh, PhD, Guidehouse, Washington, DC; Emily Troncoso; Louise Vetter, Huntington’s Disease Society of America, New York, New York); and for the generous support from Genentech, Inc.

For more information about HD-Net, visit https://huntingtonstudygroup.org/hd-net/.

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 700 credentialed HD experts at more than 120 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.

About HD-Net
The HD-Net Community was formed in 2019 through funding by Genentech, managed by the Huntington Study Group (HSG) and supported by leaders of the HD community – CHDI, HDSA and others. HD-Net is committed to elevating the level of HD care and bridging the gaps that exist in the access to that care. HD-Net’s initial focus is to improve care, deepen HD knowledge, provide resources, emphasize the patient, harness technology, and support new therapies.

View full press release.

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 of participation in this first-of-its-kind study. We are extremely grateful to all the participants who enrolled,” 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 data and lessons learned from this pilot will inform and drive further virtual studies that will engage larger segments of the Huntington’s Disease (HD) population, family members, and caregivers, thereby improving overall development of HD care and treatments,” said Ira Shoulson, MD, Professor of Neurology at the University of Rochester and founder of Grey Matter Technologies, now a wholly owned subsidiary of Modality.ai.

The HSG collaborated with technology companies Grey Matter Technologies 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’s disease from the patient perspective, giving voice to consenting adults to report what they feel, experience, and how they function with Huntington’s disease. This research platform is a significant opportunity for the HSG to serve the HD community because myHDstory™ enables collection of data from patients about their symptoms, without having to schedule in-office visits.
 
“We thank the Griffin Foundation, NJ Cure HD, Ira and Josie Shoulson, Elise Kayson-Rubin, and Richard Rubin for their financial 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 who 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 myHDstoryTM, visit https://huntingtonstudygroup.org/myhdstory/  

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 700 credentialed HD experts at more than 120 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.

About Neurotargeting

Neurotargeting was founded in 2007 by Pierre-Francois D’Haese, PhD., Benoit Dawant, PhD. and Peter Konrad, M.D PhD. Neurotargeting, LLC emerged from more than a decade of research performed at Vanderbilt University and supported by NIH funding focused on solving such issues. From this research emerged a unique system called Cranial vault, connecting some of the active groups researching the new potential of DBS such as Vanderbilt University, Ohio State University, Wake Forest University, and the VA in Richmond. With a unique research relationship with its partners, Neurotargeting has built a disruptive software platform. By linking care providers, neuroscience centers and device manufacturers, Neurotargeting aims at improving patients’ care experience and life.

About Modality.ai

Modality.ai is a digital health startup, which acquired Grey Matter Technologies in June 2022. Grey Matter was founded in January 2017 by Ira Shoulson, MD and Carol A Christopher, PhD, who had worked together for nearly three decades to advance innovative medical products for patients with neurological and developmental disorders. Grey Matter’s founders, management team and advisors have long recognized the unmet need to harness the power of the patient’s story, typically told verbatim in unstructured language. Together with the Modality.ai team, they are leading the application of data science technologies aimed at Making Patients Heard™ in healthcare and clinical research settings.

View full press release.

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 Disease Rating Scale (vUHDRS®), assessing the reliability of a virtual use of the HSG’s standard assessment tool, the Unified Huntington’s Disease Rating Scale (UHDRS®). The first participant was enrolled at Hereditary Neurological Disease Centre in Wichita, KS.

View full press release.

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 release.

Vaccinex Receives FDA Fast Track Designation for VX15 Antibody for the Treatment of Huntington’s Disease

vaccinex_logoVaccinex, 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 the brain.

Read the company’s press release.

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 in HD.

Feigin and Kayson will begin their four-year term as chair and co-chair May 1, 2018, succeeding Ray Dorsey and Blair Leavitt, who along with Julie Stout, Joni Steinman, and Shari Kinel, expertly led HSG through the last four years. They were democratically elected by HSG’s world-wide membership of more than 500 investigators, coordinators, and other researchers and care providers.

Feigin, a Professor of Neurology at NYU Langone Health and co-director of the Marlene and Paolo Fresco Institute for Parkinson’s and Movement Disorders, has been involved in the care of HD patients and research since his participation in the Venezuela Collaborative Research Group, which isolated the HD gene 25 years ago. Kayson, Director of Clinical and Strategic Initiatives at the University of Rochester’s Center for Health + Technology (CHeT), has been involved in the care of HD patients and research since the inception of the HSG and was one of the founders of the organization.

Feigin’s independent research has focused on the development of novel imaging biomarkers that could be used as outcome measures for HD clinical trials. He has served in many HSG leadership positions over the past 20 years, including as a member of the Executive Committee, chair of the Program Committee for the HD Clinical Research Symposium for five years, and currently chairs the Clinical Research Advisory Committee. Feigin is the principal investigator (PI) of the SIGNAL trial and the co-PI of LEGATO-HD, and has served as a site PI on numerous other HD trials. “I am honored and excited to serve as the Chair of this amazing organization as the most exciting new potential therapies for HD are now entering human trials,” Feigin said.

Prior to leading CHeT’s Clinical and Strategic Initiatives, Kayson was the Director of Project Management for the Clinical Trials Coordination Center (CTCC) at the University of Rochester and previously worked in industry. In addition, Kayson’s long involvement in all aspects of more than 50 clinical trials and the FDA approval of the only two drugs for HD gives her a deep understanding of clinical trial design, organization and conduct, and insights into and appreciation of HD clinical trials from the perspective of study participants to coordinators, investigators, CRO functions, and sponsors. She has served in many leadership positions in HSG, including as a member of the Executive Committee, co-chair of the HSG Credentials Committee, and co-chair of the HSG Educational Committee. “It is exciting to be part of the momentum of research in HD. I am honored to serve as the HSG Co-Chair and look forward to reaching the goal of finding treatments that make a difference for our patients and families,” said Kayson.

HSG appreciates all the candidates who ran for these positions and salutes their enthusiasm and commitment to the entire election process. In addition, we thank each of our members who attended the webinars, viewed the webpages, and took the time to cast votes for this important election.

As HSG begins our 25th year of seeking treatments that make a difference, let’s join in congratulating our new leadership and wishing them the very best as they pursue their vision of partnerships, innovation and education to bring an exciting future to HSG.

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 processing and communication in Huntington disease (HD). Dr. Zarotti is currently part of a team collaborating with the British Psychological Society to produce new guidance on psychological approaches to the understanding and treatment of psychological difficulties in people with motor neurodegenerative conditions such as HD.

The Peter Como Scholarship, named in memory of one of HSG’s founders and biggest supporters, is awarded annually for a professional in the mental health field to attend HSG 2018: Unlocking HD. The Como Scholarship includes two nights’ lodging, travel funding, and a modest stipend.

The Huntington Study Group was formed in 1993 and is the world’s first HD cooperative therapeutic research organization. Twenty-five years later, HSG is a world leader in facilitating high quality clinical research trials and studies that work toward finding effective treatments for HD. HSG has the first and largest HD clinical research network of more than 400 active and compassionate investigators, coordinators, scientists and HD experts at more than 120 credentialed research sites around the globe. HSG members are world experts in caring for individuals and families impacted by Huntington disease. Visit https://huntingtonstudygroup.org/ for more information.

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 families to share their knowledge.

HSG 2019 general sessions will be held on November 7th and 8th, with the event concluding on Saturday, November 9th at the Hyatt Regency. This year’s meeting will continue to feature the signature Family Day session on Saturday for families members to get in-person insights and helpful advice for leaders in the field. Saturday will also offer the HSG’s accredited provider training, CME4HD, in-person.

Additional information regarding registration and agenda will be provided as those details become available.

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 Meeting Education.

The HSG has selected several longstanding members of the organization that are well-known experts in their field for an initial 3-year term. Dr. Mary Edmondson has agreed to chair the Provider Education Committee. Jody Goldstein will chair the Member Education Committee. Dr. Martha Nance will serve as chair for the Family Education Committee, while Dr. Lauren Seeberger will take on the role of chair for the Annual Meeting Education Committee.

“The Huntington Study Group is very fortunate to have so many dedicated professionals working on Huntington’s disease as members of HSG – like Dr. Edmondson, Dr. Nance, Dr. Seeberger, and Ms. Goldstein,” said Dr. Andrew Feigin, HSG Chair. “We believe that working collaboratively, but in more focused teams will help enhance the quality of our educational offerings, and move the HSG educational agenda forward.”

About HSG
Founded in 1993, the Huntington Study Group is a not-for-profit company and the world’s first Huntington’s Disease (HD) cooperative therapeutic research organization. The HSG is a leader in conducting clinical trials for HD. The HSG also offers educational services to healthcare professionals and care providers on treating patients with HD.

For More information:
Kevin Gregory
585-244-8804
kevin.gregory@hsglimited.org


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