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Among patients with haemoglobinopathies, the reasons for inadequate and incomplete diagnoses and therapies can be manifold. In medically advanced countries, where haemoglobinopathies are rare, a major problem is awareness of the disease. There are non-responders to standard treatments and patients with severe complications who need immediate access to curative approaches. The outpatient clinic for haemoglobinopathies is a specialised clinic within the Department for Paediatric Oncology and Haematology and collaborates with adult haematology and Labor Berlin. With 210 paediatric sickle cell patients (since 2021 also from newborn screenings) and approximately 50 thalassemia patients, it is the largest paediatric haemoglobinopathy centre in Germany (Kogel, F. et al., 2021). Gene therapy will be established within the next 2-3 years. Within CADS, an expert panel of national and international experts (clinicians and scientists) will discuss complex cases and individualised therapies. Patients will be referred from Charité and from parties participating in the panel. Expert interactions will give rise to new cooperation and (research) projects. There is also an opportunity to establish international guidelines, especially for countries and centres with reduced medical care options. A platform for patient assessment and better patient information is being developed as part of CADS.

PD Dr. med. Lena Oevermann

Pediatric Hematologist

Contact information
Address:Charité – Universitätsmedizin Berlin
Augustenburger Platz 1, 13353 Berlin

Phone:+49 30 450 666813
E-mail:lena.oevermann@charite.de