Sickle-cell Disease Registry of the GPOH (SichReg)

University Hospital Heidelberg

Status: Enrolling

Conditions: Sickle Cell Disease

Study type: Observational

Funder types: Other; Industry

Identifiers

NCT03327428

Register Sichelzellkrankheit

Details and patient eligibility

About

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/

Enrollment: 1,000 estimated patients

Sex: All

Ages: Under 100 years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• signed informed consent

• current residency in either Germany, Austria or Switzerland

• sickle cell disease confirmed by hemoglobin analysis or molecular genetic analysis

  • Homozygous sickle cell disease (HbSS)
  • HbSC disease
  • Sickle cell disease HbS / bThal
  • Other, rare sickle cell syndromes such as HbS/OArab, HbS/HPFH, HbS/E, HbS/D Punjab, HbS/C Harlem, HbC/S Antilles, HbS/Quebec-CHORI, HbA/S Oman, HbA/Jamaica Plain

Exclusion criteria

• isolated heterozygous trait for HbS

Trial design

1,000 participants in 1 patient group

Patients with Sickle Cell Disease

Description:

Patients with any sickling condition, including among others Sickle Cell Anemia, HbSC Disease, HbS-betaThal, excluding Sickle Cell Trait.