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Paper Details

Recommendations for Improving the Quality of Rare Disease Registries.
Int J Environ Res Public Health
95
2018
RD, Rare Disease, Rare diseases, patient, rare disease, rare diseases
Author NameAffiliation
Manuel Posada de la PazInstitute of Rare Diseases Research
Marco RoosLeiden University Medical Center
Marco RoosLeiden University Medical Center
Ronald CornetUniversity of Amsterdam, Amsterdam Public Health Research Institute
Deborah MascalzoniCentre for Research Ethics & Bioethics (CRB) Uppsala University
Yaffa RubinsteinNational Library of Medicine/National Institutes of Health
Hanns Lochm??llerDepartment of Neuropediatrics and Muscle Disorders Medical Center, University of Freiburg Faculty of Medicine
Hanns Lochm??llerBarcelona Institute of Science and Technology (BIST)
Domenica TaruscioNational Centre for Rare Diseases, Istituto Superiore di Sanita
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