The 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
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, 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.
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
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
Ying Kuen Cheung, PhD, Columbia University Medical Center, New York, NY, USA
Mary Edmonson, HD Reach, Raleigh, NC, USA
Raymund Roos, MD, Leiden University Medical Center, Leiden, the Netherlands
Aad Tibben, PhD, Leiden University Medical Center, Netherlands (retired) – Committee Chair
Daniel Weintraub, MD, University of Pennsylvania, Philadelphia, PA, USA
Clinical Trial Committee (CTC)
The Enroll-HD Clinical Trial Committee (CTC) provides recommendations and guidance to clinical trial sponsors for clinical development and/or review of trial protocols for operational support using Enroll-HD resources.
- Initial contact point for sponsors planning interventional therapeutic HD clinical programs
- Offers expert advice to partners in pharma, biotech, device companies and academic consortia.
- Access to CHDI clinical expertise
- Panel of independent expert advisors in HD and all aspects of clinical trial design and methodology
- Interface between the Enroll-HD platform and partners
- Provision of advice and platform support and provides an opportunity for consultation in the early stages of protocol/program development
- Oversight of HD Clinical Trial Site Certification Program
Chair: Cristina Sampaio; Management: Juliana Bronzova, Tim McLean, Swati Sathe, Jenny Townhill.
Please contact Jenny Townhill (email@example.com) for further information.
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 firstname.lastname@example.org