Enroll-HD is sponsored by CHDI Foundation, a privately funded nonprofit biomedical research organization dedicated to rapidly and collaboratively developing therapies for Huntington’s disease. In addition to sponsoring Enroll-HD, CHDI funds academic researchers focused on HD, conducts research to develop new treatment ideas, and partners with biotechnology and pharmaceutical companies to develop novel drugs and therapeutics. The goal of the organization is to accelerate the development and testing of new therapies for HD so they can be made available to patients in the fastest possible time.
The European Huntington’s Disease Network (EHDN) is a network of more than 1,000 clinical investigators, other healthcare professionals and researchers, patient advocates and people affected by HD that together share resources and information and coordinate efforts to develop and test new interventions to improve the lives of people with HD. Funded by CHDI Foundation, EHDN is a platform for collaboration, allowing people in many nations to work together toward new treatments and better care of people with HD. Enroll-HD builds upon REGISTRY, an observational study launched by EHDN that involves more than 12,000 participants who are now transitioning into Enroll-HD.
Quintiles is a global clinical research company specializing in the logistical planning and management of clinical research studies. Quintiles coordinates the implementation and day-to-day management of the Enroll-HD study worldwide.
2MT is a German software development and information technology company that created the electronic data capture (EDC) system used to collect, manage and protect Enroll-HD clinical data.
BioRep, based in Milan, Italy, stores the biological samples collected as part of Enroll-HD. Its infrastructure, technology and back-up systems maintain and preserve samples efficiently and securely.
The Laboratory of Neuroimaging (LONI) at the University of Southern California has specialized expertise in housing and protecting massive scientific datasets. It manages the coded data that will be made available to researchers working on HD.
The people behind Enroll-HD:
Enroll-HD Principal Investigator Bernhard Landwehrmeyer, MD, FRCP, is professor of neurology at the University of Ulm in Germany. In this interview, which appeared in the February 2013 Enroll! newsletter, Landwehrmeyer talks about why Enroll-HD was launched and why the study is so important.
To meet the Enroll-HD leadership team, see the Committees and Working Groups page.