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NCT Number: NCT03327428

Sickle-cell Disease Registry of the GPOH

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/

Recruiting

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Key information

Conditions

Sickle Cell Disease Anemia Anemia, Hemolytic Anemia, Hemolytic, Congenital Anemia, Sickle Cell Congenital, Hereditary, and Neonatal Diseases and Abnormalities Genetic Diseases, Inborn Hematologic Diseases Hemic and Lymphatic Diseases Hemoglobinopathies

Age range

0 year–100 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Change in incidence of sickle-cell disease

    Time frame: Baseline and yearly, up to 10 years

    The incidence of sickle-cell disease will be reported every year in comparison to the preceding Report.

Secondary outcomes

  1. Complications of sickle-cell disease

    Time frame: Baseline and yearly, up to 10 years

    In addition to the incidence of the disease itself also possible complications will be reported in comparison to the preceding report (in case of the first report, only the prevalence will be reported as baseline).

  2. Treatment of sickle-cell disease

    Time frame: Baseline and yearly, up to 10 years

    In addition to the incidence of the disease itself also the treatment received will be reported in comparison to the preceding report (in case of the first report, only the prevalence will be reported as baseline).

Study contacts

Contact information is provided by the study sponsor or research team.

Joachim Kunz, Dr.

CONTACT

[email protected]

06221 56 4555

Laura Tagliaferri, Dr.

CONTACT

[email protected]

06221 56 4555

Sponsors and collaborators

Lead sponsor

University Hospital Heidelberg

Other

Collaborators

  • Charite University, Berlin, Germany
  • Deutsche Kinderkrebsstiftung
  • GPOH Consortium Sickle Cell Disease
  • German Cancer Research Center
  • Johann Wolfgang Goethe University Hospital
  • Pfizer
  • University Hospital Ulm
  • Universitätsklinikum Hamburg-Eppendorf

Registry information

Official study title

Register Sichelzellkrankheit Der GPOH

Acronym: SichReg

Important dates

Study start
2016
Primary completion
2026
Study completion
2040
First posted
Oct 31, 2017
Registry last updated
Jan 24, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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