Understanding the registry data

DuchenneConnect is a patient-entered registry resource. Participants are asked to submit a copy of their molecular genetic test result, for those tested.  Other medical records are submitted as needed to help the participant complete their profile. All submitted records are stored with the patient account. Only fully completed patient profiles are included in DuchenneConnect Registry database searches. Participants are asked to update their profile every 12 months, and all historical responses are stored on a longitudinal basis.

DuchenneConnect curates the clinical and genetic information submitted by the participant. Curation is an ongoing and continuous process, however; the information searchable in the DuchenneConnect registry represents all curated and uncurated data provided by DuchenneConnect registrants. Specific details of curation can be discussed with DuchenneConnect, and may be used to refine searches.