Sickle Cell Disease Registry of the Society for Paediatric Oncology/Haematology A Study to Collect Clinical and Genetic Data on Sickle Cell Disease in German-Speaking Central Europe

What this Trial Is About

Sickle cell disease is a common inherited condition that can cause serious health problems if not detected and treated early. This registry study aims to describe how sickle cell disease affects people in German-speaking central Europe. It collects detailed clinical and genetic information and tracks treatments to identify factors that influence the disease's progression. The goal is to provide strong evidence to support adding sickle cell disease to routine newborn screening and to update care guidelines in Germany. The registry is managed by a group of five university hospitals in Berlin, Frankfurt, Hamburg, Heidelberg, and Ulm, under the Society for Paediatric Oncology/Haematology. It includes patients of all ages with various forms of sickle cell disease, confirmed by specialized blood or genetic tests. The number of participating centers is growing, and both pediatric and adult treatment centers are invited to contribute data. Participants provide ongoing clinical and genetic data, with yearly follow-up to monitor changes in the incidence and course of sickle cell disease, for up to 10 years. This long-term tracking helps researchers understand the disease better and improve patient care. The study focuses on careful documentation of the disease's characteristics and treatment outcomes to build a comprehensive knowledge base.

Sickle-cell Disease Registry of the GPOH