Central collection of patient data and biomaterial bank for aplastic anaemia and bone marrow failure syndromes

Recruiting

• Conditions: (Suspected) aplastic anaemia; congenital aplastic syndrome; congenital syndrome assosiated with cytopenia; bone marrow failure; unclear cytopenia, telomeropathy

• Registration Number: DRKS00034063
• Lead Sponsor: niklinik RWTH Aachen, Klinik für Hämatologie, Onkologie, Hämostaseologie und SZT

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Study Start: 2024-04-16
• Last Update Posted: 19 August 2024

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 99999

Inclusion Criteria

Patients suspected of having aplastic anaemia, a congenital aplastic syndrome, a congenital syndrome associated with cytopenias or an unclear cytopenia and blood is sent to the registry centre in Aachen for telomere length determination and, if necessary, genetic diagnostics.
Consent to the registry, biobanking and transmission of blood for telomere length determination and, if necessary, genetic diagnostics to the registry center in Aachen.

Exclusion Criteria

No exclusion criteria are explicitly formulated. In particular, patients with comorbidities and a non-curative intended therapy can be explicitly included in order to generate a picture of the reality of care.

Study & Design

• Study Type: observational
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
- Central collection of basic epidemiological data such as age, gender, clinical parameters<br>- The interpretation of the telomere lengths in the overall context of the data and the corresponding diagnosis as well as the time course<br>- The association of clinical parameters with telomere length and with new experimental biomarkers as prognostic or predictive markers

Secondary Outcome Measures

Name	Time	Method
- The recording of clinical endpoints: Overall survival, disease-specific mortality<br>- The association of epidemiological baseline data and clinical outcomes with telomere length and other markers<br>- Recording and describing curative and supportive therapy options