In order to further improve the development of diagnostics, therapy and care for patients with rare diseases, systematic recording in a disease-specific register is essential. Only in this way can representative statements be made on risk factors, possible prognostic factors and, above all, treatment success, as well as side effects be recorded and recognised.

For example, until the introduction of the Aachen Telomeropathy Registry in 2015, there was no corresponding registry data for patients with telomeropathies (TBD). Studies on therapeutic approaches, side effects and the psychosocial impact of the complaints of the diseases had not been recorded at all until then.

The Aplastic Anaemia and Bone Marrow Failure Syndrome Registry (AA-BMF Registry) has existed since 2021 and emerged as a further development of the Aachen Telomeropathy Registry established in 2015.

Source: AA-BMF Registry

German Register of Clinical Studies: https://drks.de/search/de/trial/DRKS00034063

Project start: 2021

End of project: -

Funding period: - (own funds)

Funding code: -

THS services:

• Operation and support of the identity management infrastructure
• Maintaining the list of persons (data correction, resolving duplicate persons)
• Pseudonymisation