TY  - GEN
AU  - Kodra, Yllka
AU  - Weinbach, Jérôme
AU  - Posada De la Paz, Manuel
AU  - Coi, Alessio
AU  - Lemonnier, S Lydie
AU  - van Enckevort, David
AU  - Roos, Marco
AU  - Jacobsen, Annika
AU  - Cornet, Ronald
AU  - Ahmed, S Faisal
AU  - Bros-Facer, Virginie
AU  - Popa, Veronica
AU  - Van Meel, Marieke
AU  - Renault, Daniel
AU  - von Gizycki, Rainald
AU  - Santoro, Michele
AU  - Landais, Paul
AU  - Torreri, Paola
AU  - Carta, Claudio
AU  - Mascalzoni, Deborah
AU  - Gainotti, Sabina
AU  - Lopez-Martin, Estrella
AU  - Ambrosini, Anna
AU  - Müller, Heimo
AU  - Reis, Robert
AU  - Bianchi, Fabrizio
AU  - Rubinstein, Yaffa
AU  - Lochmüller, Hanns
AU  - Taruscio, Domenica
PY  - 2018
DO  - 10.3390/ijerph15081644
SN  - 1660-4601
UR  - http://hdl.handle.net/20.500.12105/8902
AB  - Rare diseases (RD) patient registries are powerful instruments that help develop clinical research, facilitate the planning of appropriate clinical trials, improve patient care, and support healthcare management. They constitute a key information...
LA  - eng
PB  - Multidisciplinary Digital Publishing Institute (MDPI)
KW  - Patient registry
KW  - Quality
KW  - Rare diseases
KW  - Biomedical Research
KW  - Computational Biology
KW  - Data Accuracy
KW  - Europe
KW  - Humans
TI  - Recommendations for Improving the Quality of Rare Disease Registries
TY  - research article
ER  -