COVID-19 quickly disrupted customary clinical practices. Within few weeks, as quarantine and social distancing became the norm, in-person medical appointments became increasingly sporadic and were replaced by those conducted with audiovisual tools. In doing so, telemedicine, hitherto on the margins, became protagonist.
European EHealth Care Model for Rare Neurodegenerative Diseases(Health-RND) is a three-year telemedicine project funded under the European JPND (Joint Programme - Neurodegenerative Disease Research) to six research centers in six different European countries: Charles University of Prague for the Czech Republic , Bloomfield Hospital for Ireland, IRCCS Casa Sollievo della Sofferenza for Italy, Leiden University Medical Center and Huntington Center Overduin for Holland, ULM University for Germany, Galen Research Institute of Manchester to the United Kingdom.
HD Clarity consists of the collection of cerebrospinal fluid. The cerebrospinal fluid, if analyzed, can help to better understand the pathophysiology of HD and identify potential biomarkers of the disease. The spinal fluid is collected through a lumbar puncture and stored in a centralized biobank, which is the same as Enroll-HD (Biorep, Milan). Those who already participate in the Enroll-HD study can join the HD Clarity study.