학술논문
Recommendations for optimal interdisciplinary management and healthcare settings for patients with rare neurological diseases
Document Type
article
Author
Holm Graessner; Carola Reinhard; Tobias Bäumer; Annette Baumgärtner; Knut Brockmann; Norbert Brüggemann; Eva Bültmann; Jeanette Erdmann; Kirstin Heise; Günter Höglinger; Irina Hüning; Frank J. Kaiser; Christine Klein; Thomas Klopstock; Ingeborg Krägeloh-Mann; Markus Kraemer; Kerstin Luedtke; Martin Mücke; Thomas Musacchio; Andreas Nadke; Alma Osmanovic; Gabriele Ritter; Katharina Röse; Christopher Schippers; Ludger Schöls; Rebecca Schüle; Jörg B. Schulz; Joachim Sproß; Eveline Stasch; Gilbert Wunderlich; Alexander Münchau
Source
Orphanet Journal of Rare Diseases, Vol 19, Iss 1, Pp 1-9 (2024)
Subject
Language
English
ISSN
1750-1172
Abstract
Abstract Background In 2017, the German Academy for Rare Neurological Diseases (Deutsche Akademie für Seltene Neurologische Erkrankungen; DASNE) was founded to pave the way for an optimized personalized management of patients with rare neurological diseases (RND) in all age groups. Since then a dynamic national network for rare neurological disorders has been established comprising renowned experts in neurology, pediatric neurology, (neuro-) genetics and neuroradiology. DASNE has successfully implemented case presentations and multidisciplinary discussions both at yearly symposia and monthly virtual case conferences, as well as further educational activities covering a broad spectrum of interdisciplinary expertise associated with RND. Here, we present recommendation statements for optimized personalized management of patients with RND, which have been developed and reviewed in a structured Delphi process by a group of experts. Methods An interdisciplinary group of 37 RND experts comprising DASNE experts, patient representatives, as well as healthcare professionals and managers was involved in the Delphi process. First, an online collection was performed of topics considered relevant for optimal patient care by the expert group. Second, a two-step Delphi process was carried out to rank the importance of the selected topics. Small interdisciplinary working groups then drafted recommendations. In two consensus meetings and one online review round these recommendations were finally consented. Results 38 statements were consented and grouped into 11 topics: health care structure, core neurological expertise and core mission, interdisciplinary team composition, diagnostics, continuous care and therapy development, case conferences, exchange / cooperation between Centers for Rare Diseases and other healthcare partners, patient advocacy group, databases, translation and health policy. Conclusions This German interdisciplinary Delphi expert panel developed consented recommendations for optimal care of patients with RND in a structured Delphi process. These represent a basis for further developments and adjustments in the health care system to improve care for patients with RND and their families.