Sickle-cell Disease Registry of the GPOH

Summary

Sickle cell disease is one of the most common hereditary diseases. Most severe complications can be avoided if the disease is detected early and treated appropriately.

The sickle cell disease registry of the Society for Paediatric Oncology/Haematology aims at describing the epidemiology of sickle cell disease in German-speaking central Europe. Patients with sickle cell disease will be characterized clinically and genetically and treatment will be documented with the aim to find predictors of the course of disease.

In addition, the registry results should provide a solid evidence base to incorporate sickle cell disease into routine newborn screening and to update the national guidelines for the management of patients suffering from sickle cell disease in Germany.

A consortium of five university hospitals (Berlin, Frankfurt, Hamburg, Heidelberg, Ulm) has been mandated by the Society for Paediatric Oncology/Haematology to implement this registry.

The number of participating centers is constantly increasing and new centers that take care of either pediatric or adult patients with sickle cell disease are encouraged to support the registry.

For further information please refer to: http://www.sichelzellkrankheit.info/

Conditions

• Sickle Cell Disease

Sponsors & Collaborators

• GPOH Consortium Sickle Cell Disease

  collaborator OTHER

• Johann Wolfgang Goethe University Hospital

  collaborator OTHER

• Universitätsklinikum Hamburg-Eppendorf

  collaborator OTHER

• University Hospital Ulm

  collaborator OTHER

• Charite University, Berlin, Germany

  collaborator OTHER

• German Cancer Research Center

  collaborator OTHER

• Deutsche Kinderkrebsstiftung

  collaborator OTHER

• Pfizer

  collaborator INDUSTRY

• University Hospital Heidelberg

  lead OTHER

Principal Investigators

• Joachim Kunz, Dr. · Center for Child and Adolescent Medicine, University Medical Center Heidelberg

• Holger Cario, Prof. Dr. · University Hospital Ulm

• Regine Grosse, Dr.

• Andrea Jarisch, Dr. · Johann Wolfgang Goethe University Hospital

• Andreas Kulozik, Prof. Dr. · University Hospital Heidelberg

• Stephan Lobitz, Dr. MSc · Gemeinschaftsklinikum Mittelrhein, Koblenz

• Lena Oevermann · Charite University, Berlin, Germany

Eligibility

Min Age

0 Years

Max Age

100 Years

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2016-12-15

Primary Completion

2026-12-31

Completion

2040-12-31

Countries

• Germany

Study Locations