Table 1 Main topics and subtopics with a median ≥ 5 in the second Delphi round
Structure of the care facility | |
|---|---|
Remuneration/available time | |
Spatial equipment incl. therapy rooms | |
Integration into the health care system/establishment of cross-sector care pathways |
Ensuring neurological core expertise and core mission | |
|---|---|
Specialized training | |
Continued education and training | |
Promotion of young talent | |
Expertise for specific rare diseases/disease groups |
Composition of the interdisciplinary team | |
|---|---|
Neurology, Neuropediatrics, Cognitive Neurology, Neurogenetics, Neuropathology | |
Neuroradiology/Nuclear Medicine | |
Speech therapy, occupational therapy, physiotherapy | |
Nursing care | |
(Neuro)Psychology | |
Psychosocial/social-medical counseling | |
Genetic counseling |
Diagnostics | |
|---|---|
Next Generation Sequencing including reimbursement and evaluation |
Case conferences | |
|---|---|
On site case conferences |
Continuous care and therapy development | |
|---|---|
Interdisciplinary planning | |
Clinical trials | |
Standardized scales and scores | |
Quality of life |
Translation | |
|---|---|
Patient advocacy organizations | |
Health policy | |
Social discourse on diagnostics and treatment costs | |
Political lobbying | |
Gene Therapy |
Exchange and cooperation between rare disease centers and other partners in the health care sector | |
|---|---|
Exchange and cooperation between expertise centers for rare diseases | |
Cross-sectoral exchange and cooperation |
Databases | |
|---|---|
Collaborative registries of rare disease centers | |
Registries focused on specific disease |