Skip to content

Latest commit

 

History

History
87 lines (68 loc) · 3.33 KB

BiobankOrPatientRegistry.md

File metadata and controls

87 lines (68 loc) · 3.33 KB

Biobank or patient registries

Defines all the biobanks and/or patient registries for this EJP RD resource in the case where datasets are about content of a rare disease resources such as biobanks and patient registries.

Title

The name of the biobank or patient registry. This is a required field and needs to be unique in this spreadsheet.

Used by: Catalog

Warning This field is required, and should be unique

Description

A description of this biobank or patient registry.

Note This field is optional

PopulationCoverage

Gives an indication of the part of the population covered by this biobank/patient registry. This field is optional. When supplied it must consist of one or more of the following values: National, International, Regional. When more than one value is applicable, it should be separated by commas.

Example: National|International

Note This field is optional

Theme

It consists of 1 or more IRIs separated by commas. When set, it specifies relevant ontology concepts that classify the biobank or patient registry. Typically these can be looked up using the Ontology Lookup Service (OLS).

Warning This field is required

Publisher

The title of an organisation that has been specified on the Organisation sheet.

Warning This field is required

Webpages

This is a commas separated list of the URLs to webpages with more information regarding the organisation. Each URL has to start with http:// or https://.

Note This field is optional

Type

Select either "Biobank" or "Patient registry" depending on whether this describes a biobank or a patient registry.

Warning This field is required

Keywords

The list of keywords applicable to this biobank or patient registry, separated by commas.

Note This field is optional

Language

A comma separated list of ISO 639-1 two-letter codes for the languages this biobank or patient registry is provided in.

Example: en,nl indicates that this biobank or patient registry is available in English and Dutch/Flemish.

Warning This field is required

Access

A URL where information regarding who is allowed to access this resource is provided.

Recommendation Specifying a value for this field is recommended

AccessType

Select either "ODRL Policy" if the access to this resource is defined compliant to ODRL policy or "Access Information" if this URL provides access information.

Recommendation Specifying a value for this field is recommended

Example

Title Description PopulationCoverage Theme Publisher Webpages Type
ECEMC: Registry of the Spanish Collaborative Study of Congenital Malformations The ECEMC investigates the causes of congenital defects and malformations that are observed in newborn children. National http://www.orpha.net/ORDO/Orphanet_558|http://purl.obolibrary.org/obo/OMIABIS_0001002 Unidad de Investigación sobre Anomalías Congénitas http://www.fundacion1000.es/ecemc ejp:PatientRegistry