Purpose Compared with the general population, people with intellectual disabilities (ID) have higher incidences of major osteoporotic fracture (MOF) and hip fracture (HF), and osteoporosis develops at a younger age. The rate of HF in those aged 50 years and over is two and four times higher than that in women and men, respectively, without ID. It is essential to identify people with ID at risk of such fractures so that a targeted fracture prevention strategy can be designed. However, current fracture prediction models are derived from the general population and may underestimate risk in the ID population.

Methods Prediction models (IDFracture) for the 10-year risk of HF and MOF were developed and validated in populations of people with ID aged 30-79 years. Models were developed in the CPRD GOLD database and temporally validated in the Aurum database. The predictors included those in current fracture prediction models and ID-specific predictors such as Down syndrome. All the predictors were included in the Cox regression models. Bootstrapping was used to adjust for overfitting.

Results The development cohort included 38,665 people with IDs, 1045 with MOFs and 360 with HFs within 10 years. The external validation cohort included 76,385 people, 2420 MOFs and 1001 HFs. Discrimination, as judged by the C statistic, was good: MOF 0.775, HF 0.839. The calibration was also good but tended to overpredict at the highest predicted risks.

Conclusion IDFracture has potential as a screening tool in clinical practice to identify people with ID who are at increased risk of MOF and HF.

Brief rationale People with intellectual disability (ID) have a relatively high incidence of fracture, so current risk prediction models are not appropriate.

Main result A new prediction model for people with ID showed good calibration and discrimination in external validation.

Significance of paper This is the first such prediction model developed for people with ID.

VF, MS, GSC, and TAH report other grants from the National Institute for Health and Care Research (NIHR) during the conduct of this study. VF, MS and TAH also report grants from The Baily Thomas Charitable Fund. JR is the mother of an individual with intellectual disability.

This study was funded by the the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-1216-20017) and by the NIHR Translating Research into Policy (NIHR TRiP, reference number: NIHR202094). The funder of the study had no role in study design, data collection, data analysis, data interpretation, or writing of the report

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The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

The study obtained ethics approval through the CPRD Research Data Governance process (Protocol Numbers 18_186 and 21_000433).

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This study is based on an anonymised dataset from the Clinical Practice Research Datalink. Access rules to CPRD prevent researchers from sharing CPRD datasets. Data can be obtained via application to the Clinical Practice Research Datalink (https://www.cprd.com).