The Duchenne Data Platform (DDP)'s Duchenne Parent Project is a patient-led registry. Patients are the owners of their data and have their own data lockers where they can not only collect their Patient Reported Outcomes (PROs) but can also upload their data from other sources such as hospitals and wearables.
FAIR Data Systems S.L., on behalf of the Duchenne Parent Project
The Duchenne Data Platform (DDP) Catalog
Returns the Key Performance Indicator of the delay between symptom onset and diagnosis. This data is aggregated by disease, and by year of diagnosis, and is measured in days
A shallot service providing the endpoint for the EJP Counting Case - a count of the number of patients in the registry that have a diagnosis specified by passing an ORPHA Code
Duchenne Parent Project of the World Duchenne Organization
Performs a count of the number of times a phenotype appears in the database (i.e. how many patients in the database exhibit this phenotype)
An implementation of the Beacon2 "Individuals" endpoint for getting patient counts that match a query
DPP Data is available via a variety of privacy-preserving services, linked below
Duchenne Parent Project Data Distribution
Clinical and Patient Reported data for Duchenne and Becker muscular dystrophy patients. Conceptual metadata only. For data access, speak to the publisher of the dataset.
A Beacon2 version 4 'individuals' endpoint over CARE-SM data for the Duchenne Parent Project
Beacon2 v4 Individuals search of the DPP