Application of a national concept and framework conditions for creation and implementation of Reference Centres for Rare Diseases in Switzerland
Recommendations of a working group of the Academie Suisse des Sciences Medical (ASSM) for the Federal Health Office Public in Switzerland have been published.
The Federal Council of Switzerland instructed the (Office fédéral de la santé publique) OFSP to develop a "National Strategy for Rare Diseases" in collaboration with various stakeholders. In this context the President and the Secretary General of the ASSM met with a delegation of CI Rare diseases and concluded that it would be desirable that a working group of the ASSM made recommendations describing the scope of a "National Strategy for rare diseases." At the same time, the working group would sketch the framework conditions as prerequisites diagnostic and therapeutic interventions in Reference Centres for the prerequisite rare diseases. This working group aimed to dispel concerns of the risk of an uncontrolled increase in the cost for these measures, which in turn could contribute to a better acceptance of the "National Strategy for Rare Diseases."
In this framework, conditions for the creation and implementation of Reference Centres for rare diseases was delineated. According to ASSM, the following cases fall within the competence of Reference Centres for rare diseases:
a. the disease in question requires a high level of knowledge and specific experience;
b. because of the low prevalence, the cases should be consolidated to ensure adequate support ;
c. prevention, diagnosis and treatment requiring specific techniques, technologies and sophisticated procedures.
According to the ASSM the mission of the Reference Centres should include:
Care benefits: Reference Centres should meet specific medical needs which should include rehabilitation and palliative care of patients with rare diseases. For this, they should coordinate, within their specific areas of care, skills and qualifications of several disciplines, including non-medical and social skills.
Networking: Reference Centers should cooperate with other Centres of Reference - national and international - as well as specialized centres and patient organisations. They should also network with specialised laboratories and other institutions.
Guidelines: Reference Centers should observe the guidelines for good practice along with participating in their development, dissemination and updating.
Research: Reference Centres should engage in research, improvement of disease understanding and optimisation of diagnosis, treatment and management.
National Register: Reference Centres should list all patients with rare diseases in a national registry.
The ASSM has also summarised the rights of Reference Centres, which include the right to treat all patients referred to them, the right to be included as partners in the process for supporting costs, the right and duty to treat patients across borders. For a Reference Centre to be recognised, they must complete most of the criteria outlined by the ASSM which includes the minimum set of criteria that should be followed. Further information can be found on the Swiss Orphanet website
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