trial participation

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

Why participating in clinical trials is important to Katie

Katie MoserParticipating in Huntington’s disease research is important to Katie Moser. Katie, 34, is gene positive and showing no symptoms of HD. She has a full-time job, friends, and a house, but she still chooses to take the time to participate in the trials and studies she can. She’s even driven five hours from her home in Elizabethtown, PA, to Rochester, NY, to participate.

“It’s important,” Katie said. “We need research in order to advance science. Ultimately, the goal is to find the cure or treatments or something to help in the long run. And if I weren’t going to do it, I can’t expect other people to do it. And it’s what I can do. I’m not a scientist; I’m not a doctor, but I can go do my part while I’m physically able to do it.”

Katie’s maternal grandfather died from complications of HD. She is an occupational therapist who chose to work with patients in an inpatient Huntington’s disease unit, where she saw the impact of the disease. Still, she chose to find out whether she carried the mutation, although most at-risk young people don’t. She raises money for research and participates in trials, helping to find treatments and, someday, a cure.

Katie’s advocacy and outgoing personality caught the attention of Lundbeck, a pharmaceutical company that specializes in finding therapies for central nervous system disorders. Katie is now a manager of Advocacy and Patient Support in Lundbeck’s Movement Disorder Marketing department. She travels the country, connecting with HD families at conferences, walks and other events. Her background in OT and her family experience helps her connect in a way no one else can.

Katie knows each individual’s situation is unique and doesn’t pressure anyone into participating, especially when trials need gene-positive participants. Not everyone wants to know their status.

“I tell people where to find information on trials. I direct people to the sites like HD Buzz to get information about research that will be easier for them to understand. And then I share my experience participating in trials,” Katie said.

Katie has participated in at least four multi-center trials and studies, as well as several smaller studies that only required one visit. She has traveled to New York City, Connecticut and Rochester to participate. She’s currently in ENROLL-HD, which is an observational study and one that doesn’t require participants to know their gene status.

“It’s a little exhausting,” Katie admitted. But even when one of the trials she participated in didn’t produce positive results (coenzyme Q10), at least it told researchers something.

“You don’t want to be wasting time and money. It’s important to find out what’s going on.”

To find out about HSG trials as soon as they launch, sign up for our future contact database. The Huntington’s Disease Society of America’s HD Trial Finder is a great resource for finding all currently enrolling HD trials, as well as clinicaltrials.gov.

To learn more about Katie’s experience learning her gene status, read the 2007 New York Times feature article, “The DNA Age: Facing Life with a Lethal Gene,” by Amy Harmon.

SIGNAL completes enrollment in cohort A

vaccinex_logoVaccinex 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.