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.

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.

Inclusion Criteria:

• suspected or confirmed mitochondrial disease
• willingness to participate

Exclusion Criteria:

• unwillingness to participate

All

Any data or results from the project can be shared upon written request with researchers. Data sharing requires approval by the respective scientific committee and their institutional review board.

Time frame for data usage needs to be specified in the proposal for data sharing.

Approved written proposal including the description of the research plan and data usage purpose.