The EHDN supports HD research by:
- Organising a collaborative research platform so that basic scientists, clinical professionals, HD patients and families can work together in working groups on topics of high importance.
- Running the global HD observational study Enroll-HD in collaboration with CHDI. Enroll-HD ensures worldwide standardised collection of high quality coded, longitudinal clinical data and biosamples from HD family members and controls that are easily accessible for research.
- Making clinical data and/or biosamples from more than 14,000 participants in the multinational HD observational study Registry available on request, so that researchers may analyse longitudinal data to obtain a better understanding of the natural history of the disease, and to search for biomarkers and relevant therapies.
- Awarding seed funds twice a year, thus enabling pilot studies to test new ideas.
- Ensuring the continuous education of professionals working in HD clinical care and research through the fellowship exchange programme.
- Offering grant and collaboration manager support to facilitate the grant application process.
- Developing clinical guidelines for best practice in HD care, and sharing information about the highest standard of care within the HD community.
- Offering assessment certification with a view to minimising inter-rater variability in clinical trials.
- Developing clinical tools to ensure the best possible assessments for HD.
- Organising biennial plenary meetings to keep information flowing and promote collaboration.
The EHDN supports HD clinical trials by advising clinical trial sponsors at all stages of clinical trial development through the clinical trial task force (CTTF) and by endorsing clinical trials. An EHDN endorsement is an important message to the potential participants and investigators that the study is scientifically and ethically acceptable. In addition, it provides an opportunity for trial sponsors to gain access to operational support from the EHDN central coordination and language area coordinators who speak the local language and have a close relationship with local EHDN clinical sites.
In addition, through the clinical trial site registration scheme, the EHDN and CHDI work together to ensure that staff at the EHDN clinical sites are well-trained, well-equipped and ready to participate in a wide variety of HD clinical trials at any time. For a list of previous and ongoing HD clinical trials supported by the EHDN, please click here.
Several therapies exist that help manage HD-related symptoms and thereby improve the quality of life of HD patients and their families. The EHDN working groups have developed guidelines for best practice in HD with respect to physiotherapy, nutritional management, oral feeding, oral healthcare, speech, language and communication difficulties and occupational therapy. The Genetic Testing and Counselling working group has further developed the international guidelines on predictive genetic testing.