Table 1 Directories including RD biobanks and registries

From: The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers

Name Focused on rare diseases? Focus of directory Coverage Information available URL Reference
EuroBioBank Yes Biobank Europe/International Biospecimen collections, disease names, aggregated data (No. of samples), biobank contacts, country http://www.eurobiobank.org/ [28]
Telethon Network of Genetic Biobanks Yes Biobank Italy Biospecimen collections, disease names, number of patients, proband families, biobank contacts, metadata http://biobanknetwork.telethon.it/ [60]
BBMRI-ERIC No Biobank Europe Type of samples, metadata, biobank name, country, contact details www.bbmri-eric.eu [34]
NIH Rare Diseases Registry (RaDaR) Program (formerly Global Rare Disease Registry -GRDR) Yes Registry USA List of registries previously participating in the (GRDR) https://ncats.nih.gov/radar [24]
Parent No Registry Europe Registry name, country, primary purpose, affiliation (public/private), geographical coverage, primary observational unit, governing board, data sharing http://patientregistries.eu/ror [61]
NIH lists No Registry USA Name of the registry and URL with related information https://www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries [62]
RoPR No Registry USA catalogue of registries:classification and purpose, contact and conditions of access, progress reports, common data elements https://patientregistry.ahrq.gov/ [63]
RD-Connect Registry & Biobank Finder Yes Biobank/Registry International catalogue of biobanks and registries: http://catalogue.rd-connect.eu/ [64]
     biobank/registry name, country, affiliation, contact details, aggregated data (N. of cases/samples), metadata (study documents, CRF).   
Orphanet Yes Biobank/Registry International biobank/registry name, country, affiliation (public/private), principal investigator, institution, contact details http://www.orpha.net/consor/cgi-bin/ResearchTrials_RegistriesMaterials.php?lng=EN [33]
P3G No Biobank/Registry International catalogue of biobanks including study description, networks, questionnaires, physical and cognitive measures, DNA processing and procedures to access. http://www.p3gobservatory.org/catalogs.htm [65]
ENGAGE No Biobank/Registry International Cohorts for which data and/or specimens can be made available http://www.euengage.org/data%20access%20catalogue.html [66]