{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T03:38:18Z","timestamp":1792726698555,"version":"4.5.0"},"reference-count":15,"publisher":"Springer Science and Business Media LLC","issue":"11","license":[{"start":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T00:00:00Z","timestamp":1792713600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T00:00:00Z","timestamp":1792713600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100031688","name":"Pfizer Pharma","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100031688","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Ann Hematol"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>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\u20132024). 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\u2009&lt;\u20096 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\u20132024, 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\u2009&lt;\u20096 years decreased from 31 months (2015) to 11 months from 2021 onwards (2021\u20132024). In 2024, infections were the most frequently documented clinical outcome (34.5% [298\/864]), followed by vaso\u2011occlusive 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\u2013oriented SCD care pathways in Germany.<\/jats:p>","DOI":"10.1007\/s00277-026-07308-2","type":"journal-article","created":{"date-parts":[[2026,10,22]],"date-time":"2026-10-22T22:44:42Z","timestamp":1792709082000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Sickle cell disease in Germany \u2013 trends in epidemiology, healthcare utilization and disease burden from 2015 to 2024: a claims data analysis"],"prefix":"10.1007","volume":"105","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-9705-9313","authenticated-orcid":false,"given":"Nils","family":"Schulze","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8435-1374","authenticated-orcid":false,"given":"Moritz","family":"Lehne","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8556-163X","authenticated-orcid":false,"given":"Anja","family":"Cengia","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8284-1775","authenticated-orcid":false,"given":"Klara Sonnie","family":"Hinrichsmeyer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0009-1486-8795","authenticated-orcid":false,"given":"Agnes","family":"Kisser","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7530-8892","authenticated-orcid":false,"given":"Ferras","family":"Alashkar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7801-4806","authenticated-orcid":false,"given":"Caoimhe","family":"Cawley","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,10,23]]},"reference":[{"key":"7308_CR1","doi-asserted-by":"publisher","first-page":"e564","DOI":"10.1016\/S2352-3026(23)00154-0","volume":"10","author":"DC Rees","year":"2023","unstructured":"Rees DC (2023) The Lancet Haematology Commission on sickle cell disease: key recommendations. Lancet Haematol 10:e564\u2013e567. https:\/\/doi.org\/10.1016\/S2352-3026(23)00154-0","journal-title":"Lancet Haematol"},{"key":"7308_CR2","doi-asserted-by":"publisher","first-page":"102567","DOI":"10.1016\/j.bcmd.2021.102567","volume":"89","author":"FB Piel","year":"2021","unstructured":"Piel FB, Jobanputra M, Gallagher PG, Weber R, Laird PW, McGahan AM (2021) Co-morbidities and mortality in patients with sickle cell disease in England: A 10-year cohort analysis using hospital episodes statistics (HES) data. 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Lancet Haematol 10:e585\u2013e599. https:\/\/doi.org\/10.1016\/S2352-3026(23)00118-7","journal-title":"Lancet Haematol"},{"key":"7308_CR4","doi-asserted-by":"publisher","first-page":"e28130","DOI":"10.1002\/pbc.28130","volume":"67","author":"JB Kunz","year":"2020","unstructured":"Kunz JB, Lobitz S, Grosse R, Oevermann L, Hakimeh D, Jarisch A, Cario H, Beier R, Schenk T, Schneider DT, Gro\u00df-Wieltsch U, Prokop A, Heine A, Khurana M, Erlacher M, D\u00fcrken M, Linke B, Fr\u00fchwald M, Corbacioglu S et al (2020) Sickle cell disease in Germany: Results from a national registry. Pediatr Blood Cancer 67:e28130. https:\/\/doi.org\/10.1002\/pbc.28130","journal-title":"Pediatr Blood Cancer"},{"key":"7308_CR5","doi-asserted-by":"publisher","first-page":"4543","DOI":"10.3390\/jcm10194543","volume":"10","author":"JB Kunz","year":"2021","unstructured":"Kunz JB, Schlotmann A, Daubenb\u00fcchel A, Lobitz S, Jarisch A, Grosse R, Cario H, Oevermann L, Hakimeh D, Tagliaferri L, Kulozik AE (2021) Benefits of a disease management program for sickle cell disease in Germany 2011\u20132019: The increased use of hydroxyurea correlates with a reduced frequency of acute chest syndrome. J Clin Med 10:4543. https:\/\/doi.org\/10.3390\/jcm10194543","journal-title":"J Clin Med"},{"key":"7308_CR6","doi-asserted-by":"publisher","first-page":"986","DOI":"10.1055\/a-0719-5165","volume":"81","author":"D Pattloch","year":"2019","unstructured":"Pattloch D (2019) Sichelzellkrankheit unter Neugeborenen in Deutschland: Eine Studie an Routinedaten der AOK [Sickle cell disease in newborns in Germany: Analysis of the AOK health insurance data]. 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AWMF Leitlinien-Register"}],"container-title":["Annals of Hematology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00277-026-07308-2","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00277-026-07308-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00277-026-07308-2.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,10,23]],"date-time":"2026-10-23T02:58:03Z","timestamp":1792724283000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00277-026-07308-2"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,10,23]]},"references-count":15,"journal-issue":{"issue":"11","published-online":{"date-parts":[[2026,11]]}},"alternative-id":["7308"],"URL":"https:\/\/doi.org\/10.1007\/s00277-026-07308-2","relation":{},"ISSN":["1432-0584"],"issn-type":[{"value":"1432-0584","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,10,23]]},"assertion":[{"value":"18 June 2026","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"5 October 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"23 October 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Analyses were based on anonymized secondary claims data and conducted in accordance with German legal and regulatory requirements, including \u00a7\u00a075 SGB X. An ethics waiver was documented (approval number: 305052025ANF).","order":1,"name":"Ethics","label":"Ethics approval","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":2,"name":"Ethics","label":"Consent to participate","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Not applicable.","order":3,"name":"Ethics","label":"Consent for publication","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"Nils Schulze was an employee of Pfizer Pharma GmbH at the time of study conduct but not at the time of publication. Klara Sonnie Hinrichsmeyer, Agnes Kisser, and Caoimhe Cawley are employees or former employees of Pfizer Pharma GmbH and may hold Pfizer stock. Moritz Lehne is an employee of Cytel Inc. contracted by Pfizer for conducting the study. Anja Cengia is an employee of InGef subcontracted for data analysis. Ferras Alashkar received honoraria for participation in advisory boards from Novartis, Global Blood Therapeutics\/Pfizer, Vertex, and Bristol Myers Squibb; speaker honoraria from Novartis, Global Blood Therapeutics\/Pfizer, Vertex, and Agios; and consultancy honoraria from Novartis, Bristol Myers Squibb, Global Blood Therapeutics\/Pfizer, and Vertex.","order":4,"name":"Ethics","label":"Competing interests","group":{"name":"EthicsHeading","label":"Declarations"}}],"article-number":"478"}}