Research report: Sickle cell disease in Germany – trends in epidemiology, healthcare utilization and disease burden from 2015 to 2024: a claims data analysis

The documented prevalence of sickle cell disease in Germany rose sharply between 2015 and 2024, according to a retrospective analysis of anonymized statutory health insurance claims data published in Annals of Hematology. Researchers identified 1,019 individuals with the inherited hemoglobinopathy across the ten-year study period, and the number of patients counted as prevalent in a given year climbed from 225 in 2015 to 864 in 2024. When extrapolated to the national population, administrative prevalence increased from 2.75 per 100,000 in 2015 to 10.50 per 100,000 in 2024.

The study, led by Nils Schulze and colleagues, drew on the InGef database of German statutory health insurance claims covering 2015 to 2024. Patients were identified using ICD-10-GM codes D57.0, D57.1, D57.2 and D57.8 based on inpatient and confirmed outpatient diagnoses. Prevalence was estimated with a carry-forward cohort approach, in which patients diagnosed in the current year who remained alive and observable in subsequent years were counted as prevalent. Incidence was assessed separately in children under six years of age, using the first recorded sickle cell diagnosis in the claims data as the date of incidence.

The authors caution that the rising prevalence figures cannot be straightforwardly interpreted as a true increase in the number of people living with the disease. They state that the extent to which prevalence rose because of a genuine increase in the general population, because of the carry-forward cohort method itself, or because of other factors such as changes in coding practices or healthcare-seeking behavior cannot be disentangled.

One clear temporal trend emerged in children. The median time to a recorded diagnosis in children under six fell from 31 months in 2015 to 11 months from 2021 onwards.

The analysis also documented a substantial age-dependent burden of disease. In 2024, infections were the most frequently documented clinical outcome, affecting 34.5 percent of patients, or 298 of 864. Vaso-occlusive crises, the hallmark painful episodes of sickle cell disease, were documented in 19.2 percent, or 166 of 864 patients. Mental health comorbidities were also common, with depression recorded in 19.1 percent, or 165 of 864 patients, and anxiety in 9.1 percent, or 79 of 864.

Healthcare utilization patterns shifted over the study period. The proportions of patients with inpatient or outpatient visits, and the proportions with medication prescriptions, including for antibiotics, antirheumatics and hydroxyurea, decreased over time. The authors offer several possible explanations for this decline, including changes in disease awareness, patient management and healthcare-seeking behaviors over time, or broader capture of patients with milder disease as documentation improved. They note that these possibilities cannot be separated within the claims data.

Sickle cell disease is described in the study as a rare inherited hemoglobinopathy associated with substantial morbidity and high healthcare needs. Population-based evidence on its epidemiology and real-world care patterns in Germany had remained limited, despite increasing relevance in the context of migration and the 2021 introduction of nationwide newborn screening. The study was conducted as a retrospective, non-interventional analysis, and patient characteristics, clinical outcomes, treatments and healthcare resource use were examined cross-sectionally by calendar year, stratified by age group and sex.

The authors emphasize that claims data capture diagnoses and services billed within the statutory health insurance system, which means the findings reflect documented rather than necessarily total disease burden.

Overall, the researchers conclude that their findings indicate increasing documented prevalence of sickle cell disease in Germany, alongside earlier recorded diagnosis timing in young children and a substantial age-dependent burden reflected in complications, mental health comorbidity and healthcare utilization. They state that the results can inform healthcare planning and the development of structured, life-course-oriented sickle cell disease care pathways in Germany.

Subject of Research: Trends in sickle cell disease epidemiology, healthcare utilization and disease burden in Germany from 2015 to 2024 based on statutory health insurance claims data.

Article Title: Sickle cell disease in Germany – trends in epidemiology, healthcare utilization and disease burden from 2015 to 2024: a claims data analysis

Article References: Schulze, N., Lehne, M., Cengia, A., Hinrichsmeyer, K. S., Kisser, A., Alashkar, F., & Cawley, C. (2026). Sickle cell disease in Germany – trends in epidemiology, healthcare utilization and disease burden from 2015 to 2024: a claims data analysis. Annals of Hematology, 105(11), Article 478. https://doi.org/10.1007/s00277-026-07308-2

Image Credits: AI Generated

DOI: 10.1007/s00277-026-07308-2

Keywords: sickle cell disease, Germany, claims data, epidemiology, prevalence, healthcare utilization, vaso-occlusive crises, newborn screening, hemoglobinopathy, InGef, statutory health insurance, rare disease