Enroll-HD
The goal of Enroll-HD is to build a truly global database of clinical data and biological samples that will accelerate research world-wide. 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.
Information from the CHDI Foundation, Inc.:
Enroll-HD - A Prospective Registry Study in a Global HD Cohort
New York, NY, November 19 2010; CHDI Foundation, Inc., today announced 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 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. Enroll-HD will launch on July 1st 2011 and will also include sites from the nascent Latin American network, Red Latinoamericana 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.
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