H05 A joint initiative for improved care of huntington’s disease patients in Germany

Background In Germany at least 8000 people suffer from clinically manifest HD, ultimately resulting in patients dependent on care. There are no defined pathways for multidisciplinary HD care in Germany. While slowing down the progression of HD may be available in the future, optimized care is needed now. Aims Jointly defined activities aim to provide a comprehensive multidisciplinary treatment concept covering all HD patients’ stations. Therefore, different stakeholders collaborate: patients, families, patient organization, various medical and therapeutic specialties as well as researchers. Methods In 2020 interdisciplinary advisory boards were initiated by Deutsche Huntington-Hilfe and Roche Pharma AG to identify the most urgent topics needing attention in HD. The following areas were identified and working groups with additional people in specific roles implemented: 1. Disease Awareness & Stigmatization, 2. Networking, 3. Multidisciplinary therapy, 4. Trainings, 5. Capacity for Intrathecal Injections, 6. Publication of a statement paper and 7. Development of a HD educational book for professionals. It is special and unique that all working group members are co-creating voluntarily because they all have the common purpose to improve HD families’ conditions. Outcome First results were the drafting of the ‘statement paper’, in which further recommendations for the multidisciplinary care approach in HD are defined, various disease awareness activities and publication of HD educational book for professionals. Conclusions The collaborative working groups completed first projects and further promising steps are on the way to improve the situation of HD families in Germany. Acknowledgment We thank Roche Pharma AG for their continued support of the described activities.