CHDI
Enroll-HD – A Prospective Registry Study in a Global HD Cohort
New York, NY; 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
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compiling uniform clinical data and biological samples critical to better understanding the natural history of HD,
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building an even more comprehensive database of HD information—including biologic samples—that will be available for use by any HD investigator worldwide,
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making available larger datasets from a greater number of research participants, thereby enhancing the power of data-mining and computational biology projects,
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serving as a platform to facilitate clinical sub-studies and the development and validation of novel assessment tools for HD, and
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expediting recruitment into global clinical trials of candidate therapeutics in the coming years.
Professor Ira Shoulson, Chair of the Huntington Study Group (HSG) and Principal Investigator of the COHORT study, said “COHORT has benefited considerably from the talents, experience, and efforts of the participating HSG sites and investigators. Amalgamating COHORT, REGISTRY, and the Latin American effort into a broader, unified study will have great research potential for informing us about the nature of HD and for developing treatments that make a difference for HD. The leadership of COHORT and the HSG are committed to cooperative participation in the planning and conduct of Enroll-HD.”
The Principal Investigator of the global study will be Professor G. Bernhard Landwehrmeyer of the University of Ulm, Germany, who currently serves as a co-principal investigator of the REGISTRY study and is Chair of the European Huntington’s Disease Network (EHDN). “It’s a natural progression to combine the successful HD observational clinical studies into one worldwide effort that will harness the power of greater numbers of research participants,” said Landwehrmeyer. “The unified Enroll-HD initiative will make each individual participant’s contribution more meaningful by helping us to develop and validate novel assessment tools for HD and to conduct exploratory sub-studies. It will also accelerate the path to effective treatments for HD by providing a means for sites to more efficiently recruit volunteers for future clinical trials.”
Rodrigo Osorio, President of RLAH, said “The Red Latinoamericana de Huntington is very excited to become a part of the global Enroll-HD initiative and collaborate in this way with the international HD research community to better understand and treat Huntington’s disease.”
A planning process will now begin in which all stakeholders within the global HD community—clinicians, research participants, families, investigators, advocates—will be invited to participate. For future information updates on Enroll-HD, please send an email to ; email updates of progress and plans will be sent out periodically and a dedicated website is planned. See also the FAQs.
About CHDI Foundation, Inc.
CHDI Foundation, Inc. is a privately-funded, not-for-profit, virtual biotech company that is exclusively dedicated to rapidly discovering and developing therapies that slow the progression of Huntington’s disease (HD). As a collaborative enabler, CHDI seeks to bring the right partners together to identify and address critical scientific issues and move drug candidates to clinical evaluation as quickly as possible. Our scientists work closely with a network of more than 600 researchers in academic and industrial laboratories around the world in the pursuit of these novel therapies, providing project management to ensure that our common goals remain in focus. More information about CHDI can be found at www.chdifoundation.org.