Usage

Tip

The RD-CDM paper has now been published at Nature Scientific Data. You can read it here!

The RD-CDM is developed within an open-source community and is available for use by researchers, clinicians, and other stakeholders in the rare disease community. The RD-CDM is designed to support the collection of harmonized data for rare disease research and treatment, making interoperability a crucial enabler for improving outcomes in RD care.

Please see the License for information on the RD-CDM license.

Note

The RD-CDM is a community-driven project, and we welcome contributions from researchers, clinicians, and other stakeholders in the rare disease community. If you would like to contribute to the RD-CDM, please read our Contributing.

RareLink

RareLink is a novel rare disease framework in REDCap linking international registries, FHIR, and Phenopackets based on the RD-CDM. It is designed to support the collection of harmonized data for rare disease research across any REDCap project worldwide and allows for the preconfigured export of the RD-CDM data in FHIR and Phenopackets formats.

For more information on RareLink, please see the:

• RareLink Docuemntation: https://rarelink.readthedocs.io/en/latest/index.html

• RareLink GitHub: https://github.com/BIH-CEI/rarelink