Registry for rare anaemias

Besides the common acquired causes of anaemia, such as alimentary iron deficiency, more than 90 rare anaemias are known. There are also rare anaemias whose causes are unknown. Thalassaemias, which are common worldwide, are among the rare anaemias in Germany and other central European countries. However, due to migration movements, they are also being diagnosed in an increasing number of patients here. Due to the rare occurrence of these diseases to date, optimal diagnostic and therapeutic options for patients affected by rare anaemias are often only available to a limited extent in Germany.

The present registry pursues several objectives:

  1. assesment the epidemiology of rare anaemias
  2. assesment the clinical and haematological phenotype of the patients concerned
  3. documentation of the treatment and any complications that occur
  4. improvement of care for affected patients by advising doctors who treat patients with rare anaemias and by adapting treatment guidelines based on the results of the evaluation of the registry
  5. identification of the causes of rare and unexplained anaemia by means of specialised and individual step-by-step diagnostics
  6. establishment of a biobank with samples from patients with rare anaemias
  7. making the data available for scientific evaluation and as a decision-making aid for health policy decisions

Patients with anaemia for whom has been already established a specific registry by the GPOH are not additionally recorded in the rare anaemia registry. These include sickle cell disease (www.sichelzellkrankheit.info), severe aplastic anaemia, Diamond Blackfan anaemia and Fanconi anaemia.

The registry presented here is in accordance with the plans of the German government and the European Union to improve the living situation of patients with a rare anaemia.

Contact:

Rare Anaemia Registry
Im Neuenheimer Feld 430
69120 Heidelberg
Phone +49 (6221) 56 37918
SelteneAnaemien.KIND(at)med.uni-heidelberg.de

For more information on the Rare Anaemias Registry, please visit the GPOH Hematology Study Protal.