The EHDN believes that facilitating research to advance knowledge is essential as we strive to develop effective therapies for HD. This philosophy is applied in numerous initiatives, including open sharing of data, infrastructure and support, funding opportunities, education and training. Two large international observational studies, Enroll-HD and Registry, are conducted at some EHDN study sites in accordance with Good Clinical Practice guidelines, and make available large amounts of clinical data and biosamples to any interested researcher.
Through the EHDN working groups, a research platform has been created to enable preclinical researchers, clinical professionals, and HD patients and family members to work together on topics of high importance in HD. Funding is available twice a year via seed funds awarded for proof-of-principle or early exploratory studies, and every other year a number of fellowship grants are made available to assure the continuing education of professionals in HD clinical care and research. A grant manager and collaboration service is provided free of charge to support researchers at every stage of their research projects.
The EHDN works closely with both academic and industrial collaborators who develop treatment interventions for HD. The success of clinical trials in rare diseases such as HD depends critically on access to expertise and the availability of study participants. The EHDN has a unique combination of expertise, a network of HD clinical sites, and access to global databases of individuals affected by HD (Enroll-HD and Registry) to expedite participant recruitment into clinical trials. We have also developed a tried-and-tested infrastructure that provides high-quality services from protocol advice and endorsement, to trial/study feasibility, site selection and operational support.
One of the EHDN’s goals is to improve the care of people affected by HD by developing evidence-based clinical guidelines to share with the broader HD community. This goal is pursued via some of our working groups such as the Quality of Life working group, the Standards of Care working group, and the Physiotherapy working group. The guidelines developed so far can be found here.