TY - JOUR
T1 - Recommendations for optimal interdisciplinary management and healthcare settings for patients with rare neurological diseases
AU - Graessner, Holm
AU - Reinhard, Carola
AU - Bäumer, Tobias
AU - Baumgärtner, Annette
AU - Brockmann, Knut
AU - Brüggemann, Norbert
AU - Bültmann, Eva
AU - Erdmann, Jeanette
AU - Heise, Kirstin
AU - Höglinger, Günter
AU - Hüning, Irina
AU - Kaiser, Frank J.
AU - Klein, Christine
AU - Klopstock, Thomas
AU - Krägeloh-Mann, Ingeborg
AU - Kraemer, Markus
AU - Luedtke, Kerstin
AU - Mücke, Martin
AU - Musacchio, Thomas
AU - Nadke, Andreas
AU - Osmanovic, Alma
AU - Ritter, Gabriele
AU - Röse, Katharina
AU - Schippers, Christopher
AU - Schöls, Ludger
AU - Schüle, Rebecca
AU - Schulz, Jörg B.
AU - Sproß, Joachim
AU - Stasch, Eveline
AU - Wunderlich, Gilbert
AU - Münchau, Alexander
N1 - Publisher Copyright:
© The Author(s) 2024.
© 2024. The Author(s).
PY - 2024/1
Y1 - 2024/1
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85185109561&partnerID=8YFLogxK
UR - https://www.mendeley.com/catalogue/c2908180-a54e-34eb-b878-9c731668a184/
U2 - 10.1186/s13023-024-03023-1
DO - 10.1186/s13023-024-03023-1
M3 - Journal articles
C2 - 38347616
AN - SCOPUS:85185109561
SN - 1750-1172
VL - 19
SP - 62
JO - Orphanet Journal of Rare Diseases
JF - Orphanet Journal of Rare Diseases
IS - 1
M1 - 62
ER -