Diagnostics and therapy of patients with Diamond-Blackfan anemia (DBA)

Diagnostics and therapy of patients with Diamond-Blackfan anemia (DBA) - DBA 2000

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

DRKS

Registry ID

DRKS00004563

Enrollment

200

Registered

2013-05-21

Start date

2000-12-01

Completion date

Unknown

Last updated

2026-08-03

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

Conditions

D61.0

Interventions

Group 1: Registration of all patients with Diamond-Blackfan anemia in germany. Retrospective data collection of implemented diagnostics, therapy and therapy- related complications. Prospective data

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: diagnosed Diamond-Blackfan-Anemia, patient informed consent

Exclusion criteria

Exclusion criteria: none

Design outcomes

Primary

Measure	Time frame
Registration of all patients with Diamond-Blackfan anemia in germany. Retrospective data collection of implemented diagnostics, therapy and therapy- related complications. Prospective data collection of clinical course diagnostics, ongoing therapy and progress of disease. Application of existing therapy guidelines. As a result of this optimizing diagnostics and therapy, improving quality of life and long-term prognosis of patients with Diamond-Blackfan anemia. Verifying these guidelines concerning therapy efficiency.	—

Measure

Time frame

Registration of all patients with Diamond-Blackfan anemia in germany. Retrospective data collection of implemented diagnostics, therapy and therapy- related complications. Prospective data collection of clinical course diagnostics, ongoing therapy and progress of disease. Application of existing therapy guidelines. As a result of this optimizing diagnostics and therapy, improving quality of life and long-term prognosis of patients with Diamond-Blackfan anemia. Verifying these guidelines concerning therapy efficiency.

—

Secondary

Measure	Time frame
Moleculargenetic analyses to identify underlying genetic defects. Genotype-phenotype-studies about pathophysiology of DBA disease. Identification of patients with DBA to be in line for experimental therapy questions. Therefor there will be set up separate therapy protocols. Support of patient network „DBA-Gemeinschaft (community)“ and informing affected families about diagnostics and therapy.	—

Countries

Austria, Germany, Switzerland

Contacts

Public ContactCharlotte Niemeyer

Universitätsklinikum Freiburg, KJK, Pädiatrische Hämatologie/Onkologie, Klinik IV

charlotte.niemeyer@uniklinik-freiburg.de0761-270-43000

Outcome results

None listed

Source: DRKS (via WHO ICTRP) · Data processed: Aug 9, 2026