Global Registry and Patients
The success of the project is substantially influenced by the availability of medical data and outcome measures, which are referred by the patients themselves. Information on quality of life, experience of health care and other aspects of the patients live is important to complement the medical data but hardly to recognized in a treatment context at the clinic. Currently, there are already some national patient registries established. There is the question if the national patient registries should run in parallel or may be integrated into a global patient registry and how patient registries and clinical registries could benefit from each other. In this respect, GENOMIT will provide a platform to foster international cooperation of patient advocacy organizations (PAOs)
The focus of this work package will be on the integration of patient-reported outcomes measures (PROMs) into the global registry.
This work package is coordinated by IMP in cooperation with partners Mitocon, DGM, Lily, AMMi and supported by all other GENOMIT partners.