Overview of existing initiatives to develop and improve access and data sharing in rare disease registries and biobanks worldwide

Expert Opinion on Orphan Drugs

Volumn 4, Issue 7, 2016, Pages 775-780

  López, Estrella ^a   Thompson, Rachel ^b   Gainotti, Sabina ^c   Wang, Chiuhui Mary ^d   Rubinstein, Yaffa ^e   Taruscio, Domenica ^c   Monaco, Lucia ^d   Lochmüller, Hanns ^b   Alonso, Verónica ^f   De La Paz, Manuel Posada ^f  

^a Instituto de Salud Carlos III   (Spain)

^b NEWCASTLE UNIVERSITY   (United Kingdom)

^c ISTITUTO SUPERIORE DI SANITÀ   (Italy)

^d FONDAZIONE TELETHON   (Italy)

^e NATIONAL INSTITUTES OF HEALTH   (United States)

^f INSTITUTO DE SALUD CARLOS III   (Spain)

Author keywords

Biobanks; Data sharing; International collaboration; Interoperability; Patient registries; Standardization

Indexed keywords

ACCESS TO INFORMATION; BIOBANK; BIOINFORMATICS; CONFIDENTIALITY; DATA PROCESSING; GENOTYPE PHENOTYPE CORRELATION; HUMAN; MATCHMAKER EXCHANGE; MEDICAL INFORMATION; PATENT; PATIENT CODING; PRIORITY JOURNAL; RARE DISEASE; REFERENCE DATABASE; REGISTER; REVIEW; STANDARDIZATION;

EID: 85009101758     PISSN: None     EISSN: 21678707     Source Type: Journal    
DOI: 10.1080/21678707.2016.1182908     Document Type: Review

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