Huntington Study Group Welcomes New Leaders

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Andrew Feigin, MD, and Elise Kayson, MS, ANP, have been elected as the chair and co-chair, respectively, of the Huntington Study Group (HSG). Both Feigin and Kayson have dedicated their careers to the clinical care of patients and families and to research in HD.

Feigin and Kayson began 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. The pair was democratically elected by HSG’s worldwide membership of more than 500 investigators, coordinators, and other researchers and care providers.

Feigin, 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.
His 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 chair of the Clinical Research Advisory Committee. Feigin is the principal investigator (PI) of the SIGNAL trial and a co-PI of LEGATO-HD, and has served as a site PI on numerous other HD trials.

“It’s an exciting time to be involved in clinical research for HD because of the novel therapies that are entering clinical trials,” says Feigin. “The HSG is important because it fills a critical niche in the development of novel therapies for HD. I want to make sure we continue to be at the forefront of HD clinical research.”

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 clinical trial research since the inception of the HSG and was one of the founders of the organization.

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, her long involvement in all aspects of more than 50 clinical trials, including 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, 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,” says Kayson.

Feigin and Kayson have ambitious plans for their tenure as chair and co-chair. One of their goals is to increase HSG’s education and outreach to patients and their families. For example, they would like to help individuals understand the importance of staying in clinical trials until they are completed. “If patients don’t stay in these trials, we won’t be able to address the scientific questions and obtain robust outcomes, which are critical for submissions to the FDA,” says Kayson.

In addition, the team aims to expand its focus on innovation; for example, by promoting in its clinical trials the use of tele-visits, along with wearables and sensors, for monitoring patient information in real-time.

Feigin and Kayson also plan to lean more heavily on the HSG research community for assistance with meeting their goals. “We have the leading clinical trial experts from all over the world as part of the HSG,” says Feigin. “We need to better utilize that expertise.”

One way the pair is soliciting the help of the HSG members is by calling on them to serve on a research advisory board. The board will help in the development of protocols and studies that improve the care of patients with HD and lead to the development of novel therapies.

“What sets the HSG apart from other similar organizations is its composition as a group of researchers, clinicians, nurses, and care providers who have come together to find better treatments for HD,” says Feigin. “The HSG fills a unique and important niche in the conduct of HD clinical trials.”

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