Recommendations for optimal interdisciplinary management and healthcare settings for patients with rare neurological diseases.

Holm GraessnerCarola ReinhardTobias BäumerAnnette BaumgärtnerKnut BrockmannNorbert BrüggemannEva BültmannJeanette ErdmannKirstin HeiseGünter HöglingerIrina HüningFrank J KaiserChristine KleinThomas KlopstockIngeborg Krägeloh-MannMarkus KraemerKerstin LuedtkeMartin MückeThomas MusacchioAndreas NadkeAlma OsmanovicGabriele RitterKatharina RöseChristopher SchippersLudger SchölsRebecca SchüleJörg B SchulzJoachim SproßEveline StaschGilbert WunderlichAlexander Münchau

Published in: Orphanet journal of rare diseases (2024)

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.

Keyphrases

healthcare
clinical practice
palliative care
quality improvement
affordable care act
pain management
chronic pain
blood brain barrier
cerebral ischemia