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

Estrella LópezInstitute of Rare Diseases Research (IIER), Institute of Health Carlos III (ISCIII), Madrid, SpainCorrespondence[email protected]

Rachel ThompsonJohn Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine, Newcastle University, Newcastle, UK

Sabina GainottiNational Center for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy

Chiuhui Mary WangFondazione Telethon, Milan, Italy

Yaffa RubinsteinOffice of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, USA

Domenica TaruscioNational Center for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy

Lucia MonacoFondazione Telethon, Milan, Italy

Hanns LochmüllerJohn Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine, Newcastle University, Newcastle, UK

Verónica AlonsoInstitute of Rare Diseases Research (IIER), SpainRDR & CIBERER, Institute of Health Carlos III (ISCIII), Madrid, Spain

Manuel Posada de la PazInstitute of Rare Diseases Research (IIER), SpainRDR & CIBERER, Institute of Health Carlos III (ISCIII), Madrid, Spain

show all

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

Information for

Open access

Opportunities

Help and information

Your download is now in progress and you may close this window

Login or register to access this feature

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

Reprints and Corporate Permissions

Academic Permissions

Related research

To cite this article:

Download citation

Information for

Open access

Opportunities

Help and information

Keep up to date