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LIBRIS Formathandbok  (Information om MARC21)
FältnamnIndikatorerMetadata
00006551naa a2200709 4500
001oai:DiVA.org:uu-364837
003SwePub
008181105s2018 | |||||||||||000 ||eng|
0247 a https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-3648372 URI
0247 a https://doi.org/10.3390/ijerph150816442 DOI
040 a (SwePub)uu
041 a engb eng
042 9 SwePub
072 7a ref2 swepub-contenttype
072 7a for2 swepub-publicationtype
1001 a Kodra, Yllkau Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italy4 aut
2451 0a Recommendations for Improving the Quality of Rare Disease Registries
264 c 2018-08-03
264 1b MDPI,c 2018
338 a electronic2 rdacarrier
520 a 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 system that supports the activities of European Reference Networks (ERNs) on rare diseases. A rapid proliferation of RD registries has occurred during the last years and there is a need to develop guidance for the minimum requirements, recommendations and standards necessary to maintain a high-quality registry. In response to these heterogeneities, in the framework of RD-Connect, a European platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research, we report on a list of recommendations, developed by a group of experts, including members of patient organizations, to be used as a framework for improving the quality of RD registries. This list includes aspects of governance, Findable, Accessible, Interoperable and Reusable (FAIR) data and information, infrastructure, documentation, training, and quality audit. The list is intended to be used by established as well as new RD registries. Further work includes the development of a toolkit to enable continuous assessment and improvement of their organizational and data quality.
650 7a MEDICIN OCH HÄLSOVETENSKAPx Hälsovetenskapx Arbetsmedicin och miljömedicin0 (SwePub)303032 hsv//swe
650 7a MEDICAL AND HEALTH SCIENCESx Health Sciencesx Occupational Health and Environmental Health0 (SwePub)303032 hsv//eng
653 a rare diseases
653 a patient registry
653 a quality
7001 a Weinbach, Jeromeu Hop Trousseau, INSERM, RaDiCo,French Natl Programme Rare Dis Cohorts, Natl Inst Hlth & Med Res,UMR S933, F-75018 Paris, France4 aut
7001 a Posada-de-la-Paz, Manuelu RDR, ISCIII, Inst Rare Dis Res, Madrid 28029, Spain;CIBERER, Madrid 28029, Spain4 aut
7001 a Coi, Alessiou CNR, Inst Clin Physiol, I-56124 Pisa, Italy;FTGM, I-56124 Pisa, Italy4 aut
7001 a Lemonnier, S. Lydieu RD Connect & Vaincre Mucoviscidose French Cyst Fi, Patient Advisory Council, F-75013 Paris, France4 aut
7001 a van Enckevort, Davidu Univ Groningen, UMCG, Dept Genet, NL-9700 RB Groningen, Netherlands4 aut
7001 a Roos, Marcou Leiden Univ, Med Ctr, NL-2333 ZA Leiden, Netherlands4 aut
7001 a Jacobsen, Annikau Leiden Univ, Med Ctr, NL-2333 ZA Leiden, Netherlands4 aut
7001 a Cornet, Ronaldu Univ Amsterdam, Amsterdam UMC, Amsterdam Publ Hlth Res Inst, Med Informat, NL-1105 AZ Amsterdam, Netherlands4 aut
7001 a Ahmed, S. Faisalu Univ Glasgow, Royal Hosp Children, Off Rare Condit, Glasgow G51 4TF, Lanark, Scotland4 aut
7001 a Bros-Facer, Virginieu Patient Advisory Council RD Connect & EURORDIS Ra, F-75014 Paris, France4 aut
7001 a Popa, Veronicau RD Connect & MCT8 AHDS Fdn, Patient Advisory Council, Oklahoma City, OK 74464 USA4 aut
7001 a Van Meel, Mariekeu RD Connect & NephcEurope Fdn, Patient Advisory Council, NL-2411 DW Bodegraven, Netherlands4 aut
7001 a Renault, Danielu Patient Advisory Council RD Connect, B-1200 Brussels, Belgium;FEDERG, B-1200 Brussels, Belgium4 aut
7001 a von Gizycki, Rainaldu Patient Advisory Council RD Connect, D-53113 Bonn, Germany;PRO RETINA Deutschland, D-53113 Bonn, Germany4 aut
7001 a Santoro, Micheleu CNR, Inst Clin Physiol, I-56124 Pisa, Italy;FTGM, I-56124 Pisa, Italy4 aut
7001 a Landais, Paulu Hop Trousseau, INSERM, RaDiCo,French Natl Programme Rare Dis Cohorts, Natl Inst Hlth & Med Res,UMR S933, F-75018 Paris, France;Montpellier Univ, Clin Res Inst, EA2415, F-34093 Montpellier, France4 aut
7001 a Torreri, Paolau Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italy4 aut
7001 a Carta, Claudiou Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italy4 aut
7001 a Mascalzoni, Deborah,d 1973-u Uppsala universitet,Centrum för forsknings- och bioetik4 aut0 (Swepub:uu)debma696
7001 a Gainotti, Sabinau Ist Super Sanita, Off President, Bioeth Unit, I-00162 Rome, Italy4 aut
7001 a Lopez, Estrellau RDR, ISCIII, Inst Rare Dis Res, Madrid 28029, Spain;CIBERER, Madrid 28029, Spain4 aut
7001 a Ambrosini, Annau Fdn Telethon, I-20129 Milan, Italy4 aut
7001 a Muller, Heimou Med Univ Graz, Diagnost & Res Ctr Mol BioMed, A-8010 Graz, Austria4 aut
7001 a Reis, Robertu Med Univ Graz, Diagnost & Res Ctr Mol BioMed, A-8010 Graz, Austria4 aut
7001 a Bianchi, Fabriziou CNR, Inst Clin Physiol, I-56124 Pisa, Italy;FTGM, I-56124 Pisa, Italy4 aut
7001 a Rubinstein, Yaffa R.u NIH, Natl Lib Med, Bethesda, MD 20892 USA4 aut
7001 a Lochmueller, Hannsu Univ Freiburg, Fac Med, Dept Neuropediat, D-79160 Freiburg, Germany;Univ Freiburg, Fac Med, Muscle Disorders Med Ctr, D-79160 Freiburg, Germany;BIST, CRG, CNAG, Barcelona 08028, Spain4 aut
7001 a Mueller, Heimo4 aut
7001 a Taruscio, Domenicau Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italy4 aut
7102 a Ist Super Sanita, Natl Ctr Rare Dis, I-00162 Rome, Italyb Hop Trousseau, INSERM, RaDiCo,French Natl Programme Rare Dis Cohorts, Natl Inst Hlth & Med Res,UMR S933, F-75018 Paris, France4 org
7730 t International Journal of Environmental Research and Public Healthd : MDPIg 15:8q 15:8x 1661-7827x 1660-4601
8564 u https://doi.org/10.3390/ijerph15081644y Fulltext
8564 u https://uu.diva-portal.org/smash/get/diva2:1260740/FULLTEXT01.pdfx primaryx Raw objecty fulltext:print
8564 u https://www.mdpi.com/1660-4601/15/8/1644/pdf
8564 8u https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-364837
8564 8u https://doi.org/10.3390/ijerph15081644

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