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. Meeting reports and information about the activities of each of the committees will be posted here as available.

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:

G. Bernhard Landwehrmeyer, MD, PhD, FRCP, University Hospital of Ulm, Germany – Committee Chair
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, University Hospital of Ulm, Germany
Claudia Perandones, MD, MSc, PhD, National Laboratories and Institutes of Health, Buenos Aires, Argentina
Hugh Rickards, MD, University of Birmingham, UK
Julie Stout, PhD, Monash University, Melbourne, Australia

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
Susan Fox, MD, University of Toronto, Ontario, Canada
Arvid Heiberg, MD, Oslo Rikshospitalet, Norway (retired) – Committee Chair
Aad Tibben, PhD, Leiden University Medical Center, Netherlands (retired)
Daniel Weintraub, MD, University of Pennsylvania, Philadelphia, PA, USA