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International Journal of Environmental Research and Public Health, ISSN 1661-7827, 08/2018, Volume 15, Issue 8, p. 1644
Journal Article
Lancet, The, ISSN 0140-6736, 2011, Volume 377, Issue 9771, pp. 1057 - 1059
  The increasing mobility of populations and the globalisation of lifestyles and food products make it clear that disease knows no boundaries.11 Some rare... 
Internal Medicine | MEDICINE, GENERAL & INTERNAL | Cooperative Behavior | Registries | International Cooperation | Rare Diseases | Humans | Infrastructure | Disease | Research & development--R&D | Public health
Journal Article
European Journal of Human Genetics, ISSN 1018-4813, 11/2016, Volume 24, Issue 11, pp. 1553 - 1558
Journal Article
Clinical Trials, ISSN 1740-7745, 12/2016, Volume 13, Issue 6, pp. 671 - 676
The use of Common Data Elements can facilitate cross-study comparisons, data aggregation, and meta-analyses; simplify training and operations; improve overall... 
interoperability | data standards | data collection | data sharing | Common Data Elements | MEDICINE, RESEARCH & EXPERIMENTAL | TRIALS | National Institutes of Health (U.S.) | United States | Humans | Biomedical Research | Data Collection | Information Dissemination | Clinical trials | Extensible Business Reporting Language | Common data elements
Journal Article
EUROPEAN JOURNAL OF HUMAN GENETICS, ISSN 1018-4813, 07/2016, Volume 24, Issue 7, pp. 1096 - 1096
Journal Article
Advances in Experimental Medicine and Biology, ISSN 0065-2598, 2017, Volume 1031, pp. 141 - 147
Well-annotated and properly preserved specimens are crucial both for diagnostic purposes and for use in basic and pre-clinical research, and are especially... 
Biospecimens | GUID | Registry | Data sharing | Biological samples | Biobank | MEDICINE, RESEARCH & EXPERIMENTAL | PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH | BIOBANKING | HEALTH
Journal Article
Advances in Experimental Medicine and Biology, ISSN 0065-2598, 2017, Volume 1031, pp. 149 - 164
In the field of rare diseases, registries are considered power tool to develop clinical research, to facilitate the planning of appropriate clinical trials, to... 
Validity | Quality assurance plan | Rare diseases registries | Data quality indicators | Clinical research registry | Public health registry | MEDICINE, RESEARCH & EXPERIMENTAL | PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH | VALIDATION | CANCER REGISTRATION | CAPTURE-RECAPTURE
Journal Article
European journal of human genetics : EJHG, ISSN 1018-4813, 06/2015, Volume 23, Issue 6, pp. 721 - 728
Journal Article
European Journal of Human Genetics, ISSN 1018-4813, 07/2016, Volume 24, Issue 7, pp. 1096 - 1096
Journal Article
Journal of Biorepository Science for Applied Medicine, ISSN 2253-1785, 01/2014, Volume 2, p. 49
Rare diseases (RD) refer to a collection of approximately 5,000–8,000 individual diseases that have a low prevalence and are often genetic in origin. While RD... 
Rare diseases | Care and treatment | Forecasts and trends | Tissue banks | Neuromuscular diseases | Congenital diseases | Biological products | Laboratories | Research & development--R&D | Genomics | Patients | Marketing | Medicine | Charters | Pathology | Ethics | Researchers | Genetic counseling | Consent | Population | Public health
Journal Article
Contemporary Clinical Trials, ISSN 1551-7144, 09/2010, Volume 31, Issue 5, p. 393
Journal Article
Contemporary Clinical Trials, ISSN 1551-7144, 09/2010, Volume 31, Issue 5, p. 393
Journal Article