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

BACKGROUND: Sickle cell disease (SCD) is a rare inherited hemoglobinopathy associated with substantial morbidity and high healthcare needs. In Germany, population-based evidence on SCD epidemiology and real-world care patterns remains limited, despite increasing relevance in the context of migration and the introduction of nationwide newborn screening in 2021.

METHODS: We conducted a retrospective, non-interventional study using anonymized German statutory health insurance claims data from the InGef database (2015-2024). Patients with SCD were identified using ICD-10-GM codes D57.0, D57.1, D57.2, and D57.8 based on inpatient and confirmed outpatient diagnoses. Administrative prevalence was estimated using a carry-forward cohort approach, whereby SCD patients diagnosed in the current year and alive/observable in subsequent years were counted as prevalent. Administrative incidence was assessed in children aged < 6 years using the first recorded SCD diagnosis in claims data as the date of incidence. Analyses of patient characteristics, clinical outcomes, treatments and healthcare resource use (HCRU) were conducted cross-sectionally by calendar year, stratified by age group and sex.

RESULTS: Across 2015-2024, 1,019 individuals with SCD were identified. As might be expected using a carry forward cohort approach, annual prevalent counts increased from 225 (2015) to 864 (2024), and nationally extrapolated prevalence increased from 2.75 per 100,000 in 2015 to 10.50 per 100,000 in 2024. Median time to recorded diagnosis in children < 6 years decreased from 31 months (2015) to 11 months from 2021 onwards (2021-2024). In 2024, infections were the most frequently documented clinical outcome (34.5% [298/864]), followed by vaso‑occlusive crises (19.2% [166/864]) and mental health comorbidities (depression 19.1% [165/864]; anxiety 9.1% [79/864]). The proportions of patients with inpatient or outpatient visits, and with medication prescriptions (e.g. for antibiotics, antirheumatics, hydroxyurea), decreased over time.

CONCLUSION: This claims-based analysis indicates increasing documented SCD prevalence in Germany. However, the extent to which prevalence increased due to a true increase in the general population, due to our carry-forward cohort approach, or due to other factors such as changes in coding practices or healthcare seeking behaviors, cannot be disentangled.We observed earlier recorded diagnosis timing in young children over time, alongside substantial age-dependent burden reflected in complications, mental health comorbidity, and healthcare utilization. Possible explanations for lower proportions of patients with inpatient/outpatient visits and medication prescriptions over time may include changes in disease awareness, patient management and/or healthcare seeking behaviours over time, and/or broader capture of patients with milder disease. Overall, our findings can inform healthcare planning and structured life-course-oriented SCD care pathways in Germany.