Title |
National Registries of Rare Diseases in Europe: An Overview of the Current Situation and Experiences
|
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Published in |
Public Health Genomics, September 2014
|
DOI | 10.1159/000365897 |
Pubmed ID | |
Authors |
Domenica Taruscio, Luciano Vittozzi, Remy Choquet, Ketil Heimdal, Georgi Iskrov, Yllka Kodra, Paul Landais, Manuel Posada, Rumen Stefanov, Christiane Steinmueller, Elfriede Swinnen, Herman Van Oyen |
Abstract |
The European Union (EU) policy for healthcare requires the establishment of a system of European Reference Networks, union-wide information databases, and registries for rare diseases (RDs) based on shared criteria. In pursuing its goals, the 'Building Consensus and Synergies for the EU Registration of RD Patients in Europe' (EPIRARE) project convened a meeting with experts of the competent health authorities to discuss the role of national institutional RD patient registries in supporting EU patient registration and the room for international cooperation. With this aim, this paper comparatively analyses the current situation of national institutional RD registries in the EU. © 2014 S. Karger AG, Basel. |
X Demographics
Geographical breakdown
Country | Count | As % |
---|---|---|
Spain | 2 | 29% |
Venezuela, Bolivarian Republic of | 1 | 14% |
Italy | 1 | 14% |
Canada | 1 | 14% |
Unknown | 2 | 29% |
Demographic breakdown
Type | Count | As % |
---|---|---|
Members of the public | 7 | 100% |
Mendeley readers
Geographical breakdown
Country | Count | As % |
---|---|---|
Spain | 1 | 2% |
Brazil | 1 | 2% |
Unknown | 60 | 97% |
Demographic breakdown
Readers by professional status | Count | As % |
---|---|---|
Researcher | 10 | 16% |
Student > Ph. D. Student | 8 | 13% |
Student > Postgraduate | 6 | 10% |
Student > Bachelor | 5 | 8% |
Professor | 5 | 8% |
Other | 13 | 21% |
Unknown | 15 | 24% |
Readers by discipline | Count | As % |
---|---|---|
Medicine and Dentistry | 25 | 40% |
Pharmacology, Toxicology and Pharmaceutical Science | 4 | 6% |
Biochemistry, Genetics and Molecular Biology | 3 | 5% |
Nursing and Health Professions | 3 | 5% |
Agricultural and Biological Sciences | 2 | 3% |
Other | 11 | 18% |
Unknown | 14 | 23% |