Registry for Sickle Cell Disease in German-speaking Europe
Register Sichelzellkrankheit Der GPOH
This study is collecting information about people with sickle cell disease in Germany, Austria, and Switzerland to see how the disease affects them and improve future care and treatment.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1000 (estimated) |
| Ages | 0 Years to 100 Years |
| Sex | All |
| Sponsor | University Hospital Heidelberg Academic / other |
| Locations | 1 site (Heidelberg, Baden-Wurttemberg) |
| Trial ID | NCT03327428 on ClinicalTrials.gov |
What this trial studies
This registry aims to document the clinical and genetic characteristics of patients with sickle cell disease in Germany, Austria, and Switzerland. By collecting data on treatment and disease progression, the registry seeks to identify predictors of disease outcomes. The findings will support the integration of sickle cell disease into routine newborn screening and help update national management guidelines. The study is conducted by a consortium of five university hospitals in Germany.
Who should consider this trial
Good fit: Ideal candidates for this registry are individuals diagnosed with sickle cell disease residing in Germany, Austria, or Switzerland.
Not a fit: Patients with only the isolated heterozygous trait for HbS will not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved early detection and management of sickle cell disease, ultimately enhancing patient outcomes.
How similar studies have performed: Other studies have successfully utilized registries to improve understanding and management of sickle cell disease, indicating a promising approach.
Eligibility criteria
Show full inclusion / exclusion criteria
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
Where this trial is running
Heidelberg, Baden-Wurttemberg
- Center for Child and Adolescent Medicine, University Medical Center Heidelberg — Heidelberg, Baden-Wurttemberg, Germany (Recruiting)
Study contacts
- Principal investigator: Joachim Kunz, Dr. — Center for Child and Adolescent Medicine, University Medical Center Heidelberg
- Study coordinator: Joachim Kunz, Dr.
- Email: Joachim.Kunz@med.uni-heidelberg.de
- Phone: 06221 56 4555
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.