Overview
The main goal of the project is provision of a global registry for mitochondrial disorders to harmonize previous national registries, enable world-wide participation and facilitate natural history studies, definition of outcome measures and conduction of clinical trials.
Description
The global mitochondrial registry and natural history study is part of the EU-financed GENOMIT project, co-ordinated by Dr. Holger Prokisch, Technische Universität München (TUM).It aims at advancing the understanding of the natural history of mitochondrial disease to inform the design and facilitate the conduction of clinical trials. It also serves as a catalyst for translating basic research results into clinical practice.
The global mitochondrial registry and natural history study provides for all contingencies of national ethics and data protection rules including data access management.
Currently participating networks are:
- German network for mitochondrial diseases - mitoNET, Germany/Austria
- Italian Registry of Mitochondrial Patients - Mitocon, Italy
The inclusion of other networks and countries is possible and explicitly welcome. A major advantage of the global registry is that countries can join in, saving a lot of time, effort and funding.
Eligibility
Inclusion Criteria:
- suspected or confirmed mitochondrial disease
- willingness to participate
Exclusion Criteria:
- unwillingness to participate