The DBA registry
Diamond-Blackfan anaemia (DBA) has been the subject of intensive research in German-speaking countries since the early 1990s based on studies and registers run by the Society of Paediatric Oncology and Haematology (Gesellschaft der Pädiatrischen Hämatologie und Onkologie or GPOH) and the German Society for Haematology and Medical Oncology (Deutsche Gesellschaft für Hämatologie und Onkologie or DGHO). The current DBA register builds on the DBA 2000 study carried out by the GPOH and DGHO. More than 600 patients with DBA are currently on the register, most of them resident in Germany.
The goals of the DBA register are to optimise treatment of DBA patients by issuing standardised recommendations on diagnosis and treatment and recording the various progressions of the disease. It focuses particularly on the use of molecular genetics to clarify the aetiology of the disease in, as far as possible, all patients with DBA and on recording the health status of adult DBA patients with respect to potential long-term complications. An online module for self-submission of patient data will shortly be available for this purpose..
The DBA register collaborates closely with patients and their families in the Diamond-Blackfan-Anämie- Selbsthilfe e.V. (www.diamond-blackfan.de). The management of the DBA register is pleased to provide consultancy/advice to attending doctors and patients. It also coordinates diagnostics referrals, including diagnosis of blood smears and bone marrow samples, conducting molecular genetic diagnostic tests and cytogenetic testing. See the Download section for more information.
The DBA Register is sponsored by the Eva Uth Foundation, Friesenheim (Baden).