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

Central collection of patient data and biomaterial bank for aplastic anaemia and bone marrow failure syndromes - AA-BMF-Register

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
DRKS
Registry ID
DRKS00034063
Enrollment
99999
Registered
2024-04-16
Start date
2021-06-01
Completion date
Unknown
Last updated
2026-04-27

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

(Suspected) aplastic anaemia

Interventions

Group 1: In this registry, clinical data (symptoms, laboratory parameters, etc.) of patients with: aplastic anemia
congenital aplastic syndrome
congenital syndrome associated with cytopenia or unclear cytopenia are documented. In addition, the quality of life is documented (questionnaire) and biomaterial is collected for defined research proj

Sponsors

Uniklinik RWTH Aachen, Klinik für Hämatologie, Onkologie, Hämostaseologie und SZT
Lead Sponsor

Eligibility

Sex/Gender
All

Inclusion criteria

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

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.

Design outcomes

Primary

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

Secondary

MeasureTime frame
- The recording of clinical endpoints: Overall survival, disease-specific mortality - The association of epidemiological baseline data and clinical outcomes with telomere length and other markers - Recording and describing curative and supportive therapy options

Countries

Germany

Contacts

Public ContactTim Henrik Brümmendorf

Uniklinik RWTH Aachen, Klinik für Hämatologie, Onkologie, Hämostaseologie und SZT

madrian@ukaachen.de0241 80-89805

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: May 1, 2026