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Recommendations for Improving the Quality of Rare Disease R..:

Kodra, Yllka ; Weinbach, Jerome ; Posada-de-la-Paz, Manuel...
International Journal of Environmental Research and Public Health, 1661-7827, 2018, 15:8,. , 2018

Link: http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-364837

RT Journal
T1 <Title>Recommendations for Improving the Quality of Rare Disease Registries</Title>

UL https://suche.suub.uni-bremen.de/peid=base-ftuppsalauniv:oai:DiVA.org:uu-364837&Exemplar=1&LAN=DE
				
A1 Kodra, Yllka
A1 Weinbach, Jerome
A1 Posada-de-la-Paz, Manuel
A1 Coi, Alessio
A1 Lemonnier, S. Lydie
A1 van Enckevort, David
A1 Roos, Marco
A1 Jacobsen, Annika
A1 Cornet, Ronald
A1 Ahmed, S. Faisal
A1 Bros-Facer, Virginie
A1 Popa, Veronica
A1 Van Meel, Marieke
A1 Renault, Daniel
A1 von Gizycki, Rainald
A1 Santoro, Michele
A1 Landais, Paul
A1 Torreri, Paola
A1 Carta, Claudio
A1 Mascalzoni, Deborah
A1 Gainotti, Sabina
A1 Lopez, Estrella
A1 Ambrosini, Anna
A1 Muller, Heimo
A1 Reis, Robert
A1 Bianchi, Fabrizio
A1 Rubinstein, Yaffa R
A1 Lochmueller, Hanns
A1 Mueller, Heimo
A1 Taruscio, Domenica
PB Uppsala universitet, Centrum för forsknings- och bioetik; Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italy; Hop Trousseau, INSERM, RaDiCo,French Natl Programme Rare Dis Cohorts, Natl Inst Hlth & Med Res,UMR S933, F-75018 Paris, France; RDR, ISCIII, Inst Rare Dis Res, Madrid 28029, Spain;CIBERER, Madrid 28029, Spain; CNR, Inst Clin Physiol, I-56124 Pisa, Italy;FTGM, I-56124 Pisa, Italy; RD Connect & Vaincre Mucoviscidose French Cyst Fi, Patient Advisory Council, F-75013 Paris, France; Univ Groningen, UMCG, Dept Genet, NL-9700 RB Groningen, Netherlands; Leiden Univ, Med Ctr, NL-2333 ZA Leiden, Netherlands; Univ Amsterdam, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Med Informat, NL-1105 AZ Amsterdam, Netherlands; Univ Glasgow, Royal Hosp Children, Off Rare Condit, Glasgow G51 4TF, Lanark, Scotland; Patient Advisory Council RD Connect & EURORDIS Ra, F-75014 Paris, France; RD Connect & MCT8 AHDS Fdn, Patient Advisory Council, Oklahoma City, OK 744...
YR 2018
K1 rare diseases
K1 patient registry
K1 quality
K1 Occupational Health and Environmental Health
K1 Arbetsmedicin och miljömedicin
JF International Journal of Environmental Research and Public Health, 1661-7827, 2018, 15:8,
LK http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-364837
DO http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-364837
SF ELIB - SuUB Bremen

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