Tumor-induced osteomalacia (TIO) is an ultra-rare disease caused mostly by benign tumors that secrete fibroblast growth factor-23. Because of nonspecific symptoms, the diagnostic delay is long, and therapy can be challenging. Moreover, epidemiological data on TIO are scarce owing to its rarity. Therefore, this study aimed to quantify TIO’s incidence rates and prevalence in Germany. Retrospective longitudinal and cross-sectional analyses were conducted using anonymized German claims data from the statutory health insurance (SHI) database. This database, which comprises the data of approximately 5 million insurants, is a representative sample of the German population and supports national projections. As there is no unique International Statistical Classification of Diseases and Related Health Problems (ICD) code for TIO, operational categories based on different surrogates were defined to determine the prevalence and incidence rates of TIO among probable patients. This study showed that TIO has a prevalence of (documented code, advanced imaging, medication, or tumor removal) 0.187 per 100,000 persons and an incidence rate of ≤ 0.094 per 100,000 person years. This analysis provides the first epidemiological insight into German patients with TIO. Despite the general limitations associated with the analysis of SHI claims data of ultra-rare diseases, we believe that this analysis provides a sound basis for further analysis, particularly with regard to the care situation of patients with TIO.

肿瘤诱发的骨软化症 (TIO) 是一种极其罕见的疾病，主要由分泌成纤维细胞生长因子 23 的良性肿瘤引起。由于非特异性症状，诊断延迟很长，并且治疗可能具有挑战性。此外，由于 TIO 的稀有性，其流行病学数据也很少。因此，本研究旨在量化德国 TIO 的发病率和患病率。使用来自法定健康保险（SHI）数据库的匿名德国索赔数据进行回顾性纵向和横向分析。该数据库包含约 500 万保险人的数据，是德国人口的代表性样本，支持国家预测。由于 TIO 没有唯一的国际疾病和相关健康问题统计分类 (ICD) 代码，因此定义了基于不同替代指标的操作类别，以确定可能患者中 TIO 的患病率和发病率。这项研究表明，TIO 的患病率为（记录代码、高级成像、药物或肿瘤切除）0.187/100,000 人，发病率 ≤ 0.094/100,000 人年。该分析首次提供了对德国 TIO 患者的流行病学见解。尽管对超罕见疾病的 SHI 索赔数据的分析存在普遍局限性，但我们相信该分析为进一步分析提供了良好的基础，特别是在 TIO 患者的护理情况方面。