Registry for Sickle Cell Disease in German-speaking Europe

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

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.

Why it matters

Who can join: the full rules

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 it's running

• 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Cerebrovascular Reactivity Testing with HD-DOT in Sickle Cell Patients

  This study tests whether high-density diffuse optical tomography can measure brain blood flow and oxygen use in people with sickle cell disease, to see how these signals relate to stroke risk.

  Recruiting Washington University School of Medicine · St Louis, Missouri · NCT07776444

• Adapting and testing PEN-Plus in Zambian primary care

  Aiming to see if the PEN-Plus package can be adapted and used in two Zambian hospitals to better manage chronic diseases like heart disease, diabetes, hypertension, and sickle cell in primary care.

  Recruiting Centre for Infectious Disease Research in Zambia · Lusaka, Lusaka Province · NCT07753681

• Newborn Sickle Cell Screening in Mozambique

  We’re testing a three-part plan to help babies in Mozambique get diagnosed early for sickle cell disease and start care quickly.

  Recruiting St. Jude Children's Research Hospital · Nhamatanda, Sofala · NCT07719972

• Optimizing Hydroxyurea in Children with Sickle Cell in Africa

  This study tests whether raising hydroxyurea to a maximum tolerated dose is safe and beneficial for Ugandan children with sickle cell anemia already taking a fixed daily dose.

  Recruiting Phase 1/2 Children's Hospital Medical Center, Cincinnati · Kampala · NCT07708714

• Hematopoietic stem cell editing to treat sickle cell disease

  This study tests whether a patient’s own blood stem cells can be edited to remove the sickle cell triggering gene and then returned to the patient.

  Recruiting Phase 1 Boston Children's Hospital · Boston, Massachusetts · NCT07708350

• Virtual reality options to help with VOC pain in adults with SCD

  This study tests whether headset-based virtual reality can help reduce pain for adults with sickle cell disease during vaso-occlusive crises treated in an infusion center.

  Recruiting University of Maryland, Baltimore · Baltimore, Maryland · NCT07674277

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.