The Enroll-HD Global Investigator Meeting will be held in Dublin, Ireland on 21-23 June 2012. This meeting will offer investigators and research staff the opportunity to join other researchers from around the world to learn more about Enroll-HD. Investigators and Research Staff from both new and existing sites worldwide who have shown a committed interest in participating in the Enroll-HD Study (2 attendees/site) will be invited.
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Register here!Written to keep you updated on the process of getting Enroll-HD up and running through-out the world. It is released quarterly.
During November, 2010 an announcement was made to inform the HD global community of the start of a planning and consultation process to combine the existing
REGISTRY and
COHORT longitudinal clinical observation studies of Huntington’s disease (HD) into a worldwide initiative called Enroll‐HD.
The new initiative is planned as the next phase of the CHDI‐sponsored REGISTRY and COHORT studies that currently operate in Europe and North America/Australia, respectively, and will build on their many successes and strengths. The first quarter of 2011 will see key activities initiated for the planning and preparation of Enroll‐HD.
The study will also include sites from the nascent Latin American network, Red Latinamericana de Huntington (RLAH), as well as facilitate participation of specific sites in other countries such as Singapore, South Africa, and South Korea.
The active collaboration of HD patients, individuals born at risk for HD (regardless of whether they have been tested genetically), and their families is greatly valued and vital to the development of HD therapeutics.
All research participants and clinical sites currently taking part in the REGISTRY and COHORT studies are welcome and encouraged to continue into the new unified Enroll‐HD initiative!
It is anticipated that the large majority of research participants will see little difference at their clinical visits as the REGISTRY and COHORT studies transition into Enroll‐HD.
The overarching objective of Enroll‐HD is to accelerate the development of therapies for HD by
- compiling uniform clinical data and biological samples critical to better understanding the natural history of HD,
- building an even more comprehensive database of HD information—including biologic samples—that will be available for use by any HD investigator worldwide,
- making available larger datasets from a greater number of research participants, thereby enhancing the power of data‐mining and computational biology projects,
- serving as a platform to facilitate clinical sub‐studies and the development and validation of novel assessment tools for HD, and
- expediting recruitment into global clinical trials of candidate therapeutics in the coming years.
