Highlights of HSG 2016: Discovering Our Future

The Huntington Study Group held its 23rd Annual Meeting and 10th Annual Clinical Research Symposium November 2-5, in Nashville, TN.

By: Molly J. Elson, BA

HSG 2016 brought together world-renowned clinicians, scientists, coordinators, and community members united by a common passion for improving therapies for HD. Together over the course of several days in November, members gathered to celebrate achievements, explore new therapies, and welcome a new generation of scientists and families into the community. The theme of the conference chaired by Drs. Ray Dorsey and Blair Leavitt was “Progress in HD research and care.” Keynote presentations, interactive working group sessions, and educational courses explored novel therapeutic interventions and emerging models of care. Other members of the HD community joined on the meeting’s final day.

Photo: Researchers presented their findings at the research symposium.

The open sessions began on Wednesday, November 2 with a discussion of the merits of the modified UHDRS as an efficacy endpoint. Results from two major prospective cohort studies (TRACK-HD and COHORT) and clinical trials (CARE-HD) were used as examples. Panels brought together nonprofits, academia, and the pharmaceutical industry to discuss progress in capturing clinically meaningful data and optimizing trial efficiency. “HD Insights of the Year,” an open session exploring breakthrough papers, brought researchers from Harvard, King’s College London, and CHA University in South Korea to the table. Drs. Jong-Min Lee and Flavia Niccolini presented their research into genetic modifiers of time to clinical onset, and pre-symptomatic biomarkers. Similarly, Dr. Jihwan Song posited that mHTT propagates in a prion-like manner. Veteran project manager, Ms. Elise Kayson, led a forum looking back on the results of PHAROS and PREDICT and what individuals at risk for HD can learn. Later, Dr. Martha Nance led a session in which the audience was invited to bring their most challenging cases for group discussion. Ethical dilemmas discussed included how to give genetic testing results to a parent who wished their underage child to be present, and the importance of maintaining contact with research participants post-study.

Photo: Dr. David Oakes received a well-deserved award from Drs. Ray Dorsey and Ira Shoulson in appreciation of his years of service.

A warm reception concluded the second day of activities. Drs. Ira Shoulson and Ray Dorsey presented well-deserved awards to Dr. David Oakes, Dr. Jody Corey-Bloom, Ms. Paula Wasserman, and Ms. Elise Kayson.

The “Digital Biomarkers for HD” panel, chaired by Dr. Ralf Reilmann, stood out for its presentation of some of the most promising technologies scientists are bringing to HD research. Drs. Max Little, Larsson Omberg, Spyros Papetropoulos, and Guarav Sharma described their development of novel objective motor assessments using tools such as Apple’s ResearchKit and MC10’s wearable sensors. Dr. Dorsey’s “Progress and directions” lunch laid out a five-year plan with concrete, achievable objectives to make HD a treatable condition. He recognized key accomplishments in recent HSG trials, and challenged researchers to embrace novel technologies and revolutionize clinical trial conduct.

Dr. Bob Beall, former president and CEO of the Cystic Fibrosis Foundation (CFF), gave the HSG 2016 keynote address, “Lessons learned from cystic fibrosis.” Dr. Beall transformed care and research for cystic fibrosis by raising money to identify genes responsible for the condition, partnering with the pharmaceutical industry, and establishing a network of care centers to increase trial efficiency. His leadership helped to increase the average life expectancy of cystic fibrosis patients from 18 years to 41 years. Dr. Beall challenged HSG to leverage CFF’s successful strategies towards HSG’s own goals.

The 10th annual HD Research Symposium opened the final day of the conference with an education panel, “Regulatory path for development of medical devices and drugs.” Members of the FDA discussed the regulatory pathway through which new therapeutic technologies are evaluated. Dr. Bonnie Hennig led a panel presenting the latest in stem cell research for HD. Attendees left with an appreciation of the challenges faced by stem-cell researchers. When the scientific portion of the conference concluded, Family Education Day began. Families and friends now sat at the tables as Peter Rosenberger shared his story of compassion, hope, and humor as a caregiver. Other talks focused on how to talk about HD as a family, provide palliative care, and test those at risk. The community gathering at the event’s conclusion reinforced the conference’s theme of working together and looking towards the future in order to halt the progression of this disease.

Photo: Everyone gathered for a group photo on Thursday afternoon.

World Experts in HD to Convene in Nashville

HSG 2016 with dateTraining opportunities, family education available at HSG 2016

The Huntington Study Group (HSG), an international, non-profit network of more than 400 researchers and clinicians dedicated to seeking treatments that make a difference for Huntington disease (HD), is hosting its annual forum, HSG 2016: Discovering Our Future, Nov. 2-5 in Nashville for training and education and for presentation of new research findings and treatments to the worldwide community. The event, which is expected to draw over 300 attendees, is being held at the Gaylord Opryland Resort and Conference Center.

Among the highlights of the event are:

  • UHDRS Symposium, which focuses on a proposed modified Unified Huntington Disease Rating Scale and its use in clinical trials as an efficacy endpoint.
  • HD Innovators Forum, which includes presentations from leading HD industry partners working on developing new HD treatments.
  • CME4HD, a day-long, in-person continuing medical education course for healthcare providers hosted by HSG and Vanderbilt University School of Medicine. The course will teach providers how to care for and manage individuals with HD. Participants will have the opportunity to earn 8.75 AMA PRA Category 1 CME CreditsTM.
  • Keynote speech by Dr. Bob Beall, former CEO of the Cystic Fibrosis Foundation, who will talk about how CFF developed its care and research models in a non-profit setting through partnering with families, care providers, researchers, and biotech.
  • HD Research Symposium, highly acclaimed research presentations drawing worldwide recognition.
  • HD Family Education Day, designed for the local HD community and family members. The day starts with hearing about the latest in HD research, followed by interactive workshops and breakout sessions.

Registration costs vary on participation, but HD Family Education Day is free for HD community members. Please visit for more information and to register.

For more information:
+1 800-487-7671 or

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Registration for HSG 2016 is now open

HSG 2016 with dateRegistration for HSG 2016: Discovering Our Future is now open. The annual event will take place Nov. 3 to 5 with a special symposium about using a modified UHDRS for clinical trials on Nov. 2.

Please click here for information about registration, including the funded list. Registration is working a little bit differently this year, so it’s important to read the instructions carefully.

Click here for more information about the event, including agendas for the meeting, CME4HD, and the UHDRS Symposium.

We’re looking forward to seeing you at HSG 2016 in Nashville! It’s been a big year for HD research and we have a lot of catching up to do.

Apply now for a scholarship for HSG 2016

HSG 2016 STDShoulson Scholars

In honor of the Huntington Study Group’s founder, Dr. Ira Shoulson, HSG established the Shoulson Scholar Fund with the goal of growing the next generation of Huntington disease researchers and health care providers.

The fund recognizes outstanding junior investigators with promising futures in Huntington disease research. Awards support recipient travel and attendance of the annual HSG meeting, and cover two nights lodging, travel funding, a travel stipend, and an honorarium.

Applicants must submit a CV or Biosketch, a scientific abstract highlighting their research, a letter of support from a mentor, and a brief application letter (250 words or less), expressing their background and interest in HD and the HSG.

The Shoulson Scholar application is available online.

Not ready yet to publish an abstract? Check out the New Member Scholar program.

New Member Scholars

In an additional effort to encourage individuals wishing to pursue a career in HD research and expand its network of HD professionals, HSG developed the New Member Scholarship program. The program supports first-time attendance of HSG’s annual meeting, including travel and two nights’ lodging.

The scholarships are for individuals interested in furthering their training and education. Applicants must submit a brief application, including letter of support from a mentor, a cover letter outlining interest in HD and becoming an HD investigator and a CV/Biosketch.

The New Member Scholar application is available online.

Other HSG News…
  • Registration for HSG 2016 is coming soon! Remember to mark your calendar for Nov. 3-5 in Nashville.
  • HSG is already accepting abstracts for HSG 2016. Submit yours now.
  • Sponsorship opportunities available for HSG 2016. Check them out here.
  • Does your HSG credentialed research site want a certificate to hang in your clinic? How about a badge to put on your website? Contact HSG contact HSG at +1 800-487-7671 or
  • HSG will launch an awareness campaign in May, HD Awareness month. To get a sneak peek at videos of your HSG colleagues, check HSG Link, starting in late April. If you haven’t already signed up for HSG Link, you can do so here.

HSG 2016: Call for Abstracts

HSG 016HSG 2016 in Nashville, TN, Nov. 3 to 5, will host multiple poster sessions and platform presentations, to be chosen from submitted abstracts, throughout the conference. Authors are asked to present their posters during these sessions and interact with attendees. A limited number of abstracts will be selected for platform presentations.

Submit an Abstract by Sept. 1

Eligible abstracts may include data that have been presented previously, but please ensure they will still be of public, as well as scientific, interest. Authors will be asked to disclose relationships with funding sources and manufacturers of commercial products discussed in the presentation. Abstracts will be published in Neurotherapeutics, the journal of the American Society for Experimental NeuroTherapeutics (ASENT), and the presenting author of accepted abstracts will be provided two nights of lodging at the Gaylord Opryland during HSG 2016 in Nashville.

Learn more and submit an abstract…

HSG 2015 Evening Blog: Enroll-HD

enroll logoSo what exactly is Enroll-HD? Enroll-HD is a worldwide observational study for Huntington’s disease families. In an observational study, investigators assess health outcomes in groups of participants according to a research plan or protocol. But Enroll-HD is much more than just a joining of study participants and researchers. Enroll-HD has the opportunity to change how we look at HD, and show how the disease appears and changes over time. Enroll-HD will also eventually include almost 20,000 participants from North America, Europe, Latin America, New Zealand, and some countries in Asia. That makes Enroll-HD a huge study, the focus of which was today’s Enroll-HD Site Investigator Meeting at the first day of HSG 2015 in Tampa, FL.

What should some of the key takeaways be from today’s meeting? For starters, recruitment should still be a key part of the overall study “strategy.” The more participants in the study, the more data that can be collected on the disease itself. During the afternoon panel session with Joe Giuliano, Jody Corey-Bloom, Mark Guttman, Bernhard Landwehrmeyer, Martha Nance, and Francis Walker, the participant experience was a hot topic in an open forum discussion. Of interest was the discussion how some HD families were participating in the trials and their motivation for doing so. Some researchers reported that participants in Enroll-HD at their clinical sites like being in the study because it helped them feel as though they were contributing to a cure. Other researchers mentioned that for some people, the once-yearly study visit was a chance for a check up with their doctor to see how their disease was progressing. And for some participants, it was the only way they would get to see a Huntington’s disease specialist.

Why should this be important to the HD community? Let’s be honest, Huntington’s disease is a family affair. Did you hear the chorus of the popular 1971 song of the same name by Sly and the Family Stone? All jokes aside, the fact that HD is a family disease and that Enroll-HD is a study on HD families makes it an incredibly important and useful study that can help advance scientific knowledge on a very complex disease. Information about those who are at-risk of HD, and for those who are HD caregivers is also collected within Enroll-HD. Data collected within Enroll-HD can be shared across other HD-related studies and can help other researchers access volumes of data quickly and effectively.

How can you participate in Enroll-HD? The good news is, participation in the study is fairly easy. It requires a once yearly study visit at a study site, which you can find at the following website:

There are currently 7,696 participants in Enroll-HD. How can you help us get to 20,000 participants?

-Jared Husketh, contributor and director of clinical services for HD Reach

FDA wants to hear from you!

FDAThere’s still time and opportunity to tell the FDA your thoughts on drug development for Huntington disease!

The FDA focused on hearing from individuals with HD, family members and caregivers at its Sept. 22 Patient Focused Drug Development hearing. But from now until Nov. 23, the FDA is taking input from the entire HD community, including care providers and researchers. Specifically the FDA wants to know: At all stages of HD/JHD, if a treatment could be developed, what symptom would you most like to stop or what ability would you like to regain – what is most important to you?

The other topics about which the FDA is gathering input include the symptoms that affect daily life, how the disease affects social interactions and relationships, and how treatments have changed over time. To see the full list of topics, click here.

This is your chance to advocate on behalf of HD families and underscore with our country’s drug development process how imperative it is to address the many symptoms of HD. Please take advantage of this opportunity.

To submit your comments, click here and then click on the green “Submit a Formal Comment” button on the right side of the screen.


Regional Health Care Practitioners Invited to Learn More about Huntington Disease Oct. 23

Day-long course offering continuing education credits through USF

The Huntington Study Group (HSG), in support of the goal to make care for Huntington disease (HD) patients more available, is holding a day-long education opportunity for health care providers in Tampa on Friday, Oct. 23. “Practical Pointers and Perspectives on Huntington Disease for Local Practitioners” is part of HSG’s annual research and educational event, which, this year, is called HSG 2015: Building Our Future.

HD is uncommon, but not all that rare. Clinicians, nurses, social workers, etc., specializing in neurology, movement disorders, mental health, genetics and palliative care, as well as primary care providers, are likely to see HD patients and families who need their guidance through the complex and progressive course of the disease. This course seeks to empower providers with the knowledge and resources they need to care for HD patients.

The course, provided jointly by USF Health and HSG, is designed for health care providers in neurology and general clinicians, which has been approved for continuing education credits. The fee is $100 per registrant and includes CE credits.

Attendees will leave with:

  • An up-to-date understanding of the diagnosis, staging and typical symptoms of HD
  • Skills for expert approaches to treatment
  • Understand the role of allied health in the management of HD
  • Awareness of the available medical, education and support resources

Register here!

More details can be found here.

For more information:

Heather Hare

(585) 242-0277


LATE-BREAKING: More Scholarships Available for HSG 2015

HSG 2015 AG StD_Page_1The Huntington Study Group has more scholarships available to attend HSG 2015: Building Our Future Oct. 21-24, 2015 in Tampa, FL. The New Member Scholarship will be awarded to individuals wishing to pursue a career in HD research and/or clinical care. That includes new investigators, trainees, clinicians, geneticists, social workers, therapists, fellows, medical students, etc. The scholarship will support travel (airfare) and two nights lodging to support attendance of HSG 2015. The deadline for this extended opportunity is Sept. 14. Please share with potential applicants to help us build the future of HD research.

For more information and for online applications, click here.

Registration for HSG 2015: Building Our Future is open! Register TODAY!

Continuing education opportunity in Tampa, FL

HSG 2015 AG StD_Page_1Every year, HSG moves its annual event to another part of the country, partly to make it accessible to a new group of HD families, but also to bring training to a new group of local clinical professionals. Clinicians specializing in neurology, movement disorders, mental health, genetics, and palliative care, as well as primary care providers, are likely at some time to see HD patients and families who need their guidance through the complex and progressive course of the disease, and not all of them have had the good fortune to have had specialized HD training.

Local practitioners can learn the ABCs of HD with our experts and gain the knowledge they need to care for this community at HSG 2015’s “Practical Pointers and Perspectives on Huntington Disease for Local Practitioners” from 8:30 a.m. to 5 p.m. Friday, Oct. 23, at the Grand Hyatt Tampa Bay, Tampa, FL. The program is being jointly provided by the Huntington Study Group and USF Health. Continuing Education credits will be offered ($100 registration fee covers credits).

Attendees will leave with:
• an up-to-date understanding of the diagnosis, staging, and typical symptoms of HD
• skills for expert approaches to treatment
• understand the role of allied health in the management of HD
• awareness of available medical, educational, and support resources

Register here!

More details can be found here.

Please pass this opportunity on to others so we can expand the number of practitioners who can provide high quality care to people with HD.

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