Committees and Working Groups

Enroll-HD Governance

Enroll-HD_governance_logoThe governance of Enroll-HD is overseen by the Scientific Oversight Committee that has overall responsibility for the platform and study.

Enroll-HD is managed by the committees below.

Scientific Oversight Committee (SOC)

  • Provides oversight of study conduct and progress
  • Ensures adherence to platform goals
  • Guides scientific strategy
  • Reviews platform study protocols
  • Reviews requests to utilize platform services
  • Assists on protocol development
  • Advises on centralized data analysis
Members:

Julie Stout, PhD, Monash University, Melbourne, Australia – Committee Chair
G. Bernhard Landwehrmeyer, MD, PhD, FRCP, University Hospital of Ulm, Germany – Global PI
Karen Anderson, MD, Georgetown University, Washington, DC, USA
Jean-Marc Burgunder, MD, Swiss HD Center at Siloah Neurocenter, Gümligen (Bern), Switzerland
Daniel Claasen, MD, Vanderbilt University Medical Center, Nashville, TN, USA
Mark Guttman, MD, Centre for Movement Disorders, Toronto, Ontario, Canada
Karen Marder, MD, MPH, Columbia University Medical Center, New York, NY, USA
Michael Orth, MD, Swiss HD Center at Siloah Neurocenter, Gümligen (Bern), Switzerland
Claudia Perandones, MD, MSc, PhD, National Administration of Laboratories and Institutes of Health of Argentina, Buenos Aires, Argentina
Hugh Rickards, MD, University of Birmingham, UK

Scientific Review Committee (SRC)

Reviews requests for non-renewable samples and specified data sets from Enroll-HD and other platform studies like HDClarity and Origin-HD.

Members:

Monica Busse, PhD, Cardiff University, UK
Noelle Carlozzi, PhD, University of Michigan, Ann Arbor, MI, USA
Peter Holmans, PhD, Cardiff University, UK
Niels Henning Skotte, PhD, University of Copenhagen, Denmark
Doug Langbehn, MD, PhD, University of Iowa, Iowa City, IA, USA
Joel Perlmutter, MD, Washington University, St Louis, MO, USA – Committee Chair
Ralf Reilmann, MD, PhD, George Huntington Institute, Muenster, Germany
Richard Roxburgh, MD, University of Auckland, New Zealand
Erik van Duijn, MD, PhD, Leiden University Medical Center, Netherlands

 Data Safety Monitoring Committee (DSMC)

  • Reviews all reportable events
  • Addresses CAG discrepancies between study research genotyping and local CAG results
  • Discerns any issues of overall safety that are of concern
  • Monitors the CAG testing procedures to ensure high quality
Members:

Ying Kuen Cheung, PhD, Columbia University Medical Center, New York, NY, USA
Mary Edmonson, HD Reach, Raleigh, NC, USA
Arvid Heiberg, MD, Oslo Rikshospitalet, Norway (retired)
Aad Tibben, PhD, Leiden University Medical Center, Netherlands (retired) – Committee Chair
Daniel Weintraub, MD, University of Pennsylvania, Philadelphia, PA, USA

Clinical Trial Committee (CTC)

Provides advice to sponsors on trial design and development, reviews interventional protocols and assesses/approves platform support for clinical trials. For more info, please contact jenny.townhill@enroll-hd.org

Clinical Platform Managers

Run the day-to-day operations of the Enroll-HD study and platform and is at the centre of all study and platform activities. For more info, please contact selene.capodarca@enroll-hd.org