HSG 2015 Round-Up: Education


Clinical research is a serious business. Elise Kayson and Lauren Seeberger’s facilitated workshop on The FDA is Coming, Now What? was a lively conversation on the highly regulated environment of clinical research. Panelists discussed the value of Good Clinical Practices (GCP) and how failing to comply with GCP requirements can result in corrective actions based on the severity of the violation. Documentation was a hot topic, with one comment from panelist Jody Corey-Bloom informing participants that their clinical documentation should “read like a novel.” Panelists advocated that preparing for an audit begins with study acceptance. Sites at high risk for audit included sites with high enrollment and sites that were close to a local FDA office.

Working Groups met for open forum conversations and discussion. Martha Nance led the Care and Education Working Group in a merged session with Rehabilitation Working Group, while Karen Anderson led the Behavioral Working Group. The groups discussed the progress of projects underway and 2016 initiatives.

The challenges and benefits of being a principal investigator (PI) of a clinical trial or study were part of a panel discussion on Lessons Learned: So You Want to be a Study PI led by Elise Kayson and Jody Goldstein. The panel included a variety of speakers with experience functioning as a PI from multiple continents.  Challenges in being a PI included motivating participants to participate without overselling the potential impacts of the trial, and the need to work within a delicate balance of understanding what HD families need, experience, and providing those families with realistic information.  Engaging the HD community in participating in trials was also mentioned, with a special concern noted on the challenges of convincing HD families to participate in trials that were exclusively observational or safety-only. Veteran leaders in the field highlighted that running clinical trials can be fun. Clinical trials are a wonderful experience to connect with the HD community.


Practical Pointers and Perspectives on Huntington Disease for Local Practitioners provided an array of information and insight from experts in the HD field for medical providers in the Tampa region. Local practitioners heard about the history and progression of HD through the story of the Venezuela Kindred from Juan Sanchez-Ramos. Martha Nance presented on the “Team Care Approach in HD”  discussing the need for a multidisciplinary team  approach in HD. Members of a care team in HD should include neurology, psychology, social work, occupational therapy, speech therapy, nutritionist, and a genetic counselor. Local providers were encouraged to create a team by: Being an enthusiastic leader who can identify “go-to” therapists/nurses/social workers; Trying to find someone in mental health and genetic counseling to support your efforts; and the benefits of joining the HSG. Three clinical scenarios which providers may see or interact with HD patients were discussed by Mark Guttman. These clinical scenarios include proven and unproven family histories, as well as with or without obvious symptoms. The UHDRS diagnostic criteria were reviewed and explained as well.

HSG 016Save the Date!

Join HSG in the Music City in 2016! The Tenth Annual HSG meeting will take place November 3-5, 2016 at Opryland USA in Nashville, Tennessee.