Abstract
IntroductionIn 2009 the European Commission called for National action plans (NAP) to improve the care for persons with rare diseases. Germany set up a NAP in 2013 suggesting a three-tiered structure of co-operating centers (CC), centers of excellence (CE) and reference centers (CR). Since then CEs and CRs were organized in the framework of university hospitals. However, realization of CCs taking into account the requirements of the NAP has been slow. We therefore set-up a 12-months program to initiate co-operation and to support the development of structured CCs.MethodsOur center invited 3000 physicians from Berlin and/or Brandenburg to participate. They were chosen either due to already referring patients with rare metabolic diseases to the center, residing in a neighborhood with diverse ethnic background, known to have a high prevalence for specific metabolic diseases, or working as a medical sub-specialist (gastroenterology, hematology, rheumatology) with a high probability to diagnose a rare metabolic disease. The center offered co-operation contracts, administrative and structured medical support, privileged access to the center for physicians and their patients, as well as a program of continuous medical education (CME) over a period of 12 months.ResultsBetween 0.1 to 0.5% (mean 0.2%) of the invited physicians participated in CME meetings. None of them was interested in setting up a co-operating center. The physicians were interested in broadening their knowledge about rare diseases, but less so in direct care for these patients and not at all in fulfilling the requirements of the NAP.ConclusionsThe requirements of the NAP for CC are thought of as unrealistic due to their demands on structural re-organization, quality measurements and additional work-load for outpatient-care. Especially so, with respect for the low number of patients profiting from these efforts and the lack of re-imbursement. We suggest a reconsideration of the German NAP.
Highlights
In 2009 the European Commission called for National action plans (NAP) to improve the care for persons with rare diseases
None of them was interested in setting up a co-operating center
We suggest a reconsideration of the German NAP
Summary
In 2009 the European Commission called for National action plans (NAP) to improve the care for persons with rare diseases. We set-up a 12-months program to initiate co-operation and to support the development of structured CCs. In 2009 the European Commission published a council recommendation to set up national plans to improve the medical support of patients with rare diseases [1]. Type C centers [co-operating centers (CC) i.e. non-hospital subspecialized practices, group practices, medical care centers or hospitals] are to be responsible for one specific disease or disease-group offering interdisciplinary, multi-professional outpatient care. They deliver care for patients with a confirmed diagnosis or a clear suspected diagnosis. Responding to the NAMSE proposals “centers of expertise” have been set up since 2013 mostly at university hospitals
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