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Death in People with Down syndrome: Mortality statistics and novel predictors in US Medicaid and Medicare enrolled adults
Tewolde S, Rosellini AJ, Michals A, Skotko BG, Fortea J, Khor B, Handelman S, Rubenstein E.. medRxiv, 2026-07-20
Topic: Health services, long-term care and technology
People with Down syndrome have higher age-specific mortality rates compared to the general population as well as peers with other intellectual and developmental disabilities. While a large proportion of mortality is attributable to Alzheimer’s disease, many die prior to Alzheimer’s diagnosis and some live to old ages, dying without Alzheimer’s. Our objectives were to use 11 years of Medicaid and Medicare data to describe characteristics and factors related to death in adults with Down syndrome and use machine learning to identify which conditions most strongly predict death in the full population and stratified by age. We identified death using Center for Medicare and Medicaid Systems reported date of death health conditions using ICD 9 and 10 codes. We used a case-control design with risk set sampling to have that controls to mimic the distribution of times of incident Alzheimer’s disease. We trained gradient boosted trees to identify strongest predictors. Our cohort included 137,293 adults with Down syndrome. Among those, 30,894 (22.5%) died during the study period. Mean age at death among those who died was 55 years (SD=10). Mean age of death in those with Alzheimer’s disease was 59 (SD=7) and those without was 52 (SD=12). The most influential predictors of mortality were any claim for dementia, any claim for pneumonia, re-occurring claim for cardiovascular disease three years before index death, and any claim for heart failure and epilepsy. Our results align with previous clinical work and highlight intervenable areas to reduce mortality in the Down syndrome population.
Key findings
- People with Down syndrome have higher age-specific mortality rates compared to the general population as well as peers with other intellectual and developmental disabilities.
- Our results align with previous clinical work and highlight intervenable areas to reduce mortality in the Down syndrome population.
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Study details
- Study designcase-control study
- Participants137,293
- Effect size22.5%
- Evidence strengthModerate
How this study scored 16/100
Preprint — not yet peer-reviewed. It scored 48 on the same rubric, but non-peer-reviewed sources are capped at 16, so it shows as 16. Scored zero for randomised / blinded because the record does not state it. We have no data on times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multi-centre collaboration, so those were left out: it earned 30 of the 62 points we could judge it on, which is 48 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 2 / 10 | Tier 4 — not a peer-reviewed journal (medRxiv) |
| Journal's citation record | 0 / 4 | Not a journal article, so the journal's record does not count |
| Study design | 6 / 12 | A case-control study |
| Strength of evidence | 3 / 5 | Rated “moderate” in our summary |
| Peer-review validation | 4 / 10 | Preprint — not yet peer-reviewed. Hosted on a preprint server. |
| How recent | 5 / 5 | 2026 — within 1 year(s) of the newest study here |
| Sample size | 4 / 4 | 137,293 participants |
| Effect reported | 2 / 3 | Effect reported as a number, without an interval or test |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| Randomised / blinded | 0 / 2 | No randomisation or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 1 / 2 | Not in PubMed, but has a DOI |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 30 / 62 | Scored on 12 of 20 parts. We have no data for the rest, so they are left out: 30 of the 62 points we could judge it on is 48 out of 100. |
| Total | 48 / 100 | Capped to 16 because this is not a peer-reviewed article. |
What each of these 20 components measures, and what this score is not →
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Cite this study APA, Vancouver, BibTeX · download .bib or .ris
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. The record names 8 authors; APA and Vancouver show the first six, BibTeX and the downloads carry all of them. Check the citation against the original before you use it.
APA 7th
Tewolde, S., Rosellini, A. J., Michals, A., Skotko, B. G., Fortea, J., Khor, B., et al. (2026). Death in People with Down syndrome: Mortality statistics and novel predictors in US Medicaid and Medicare enrolled adults. medRxiv. https://doi.org/10.64898/2026.07.17.26358090
Vancouver
Tewolde S, Rosellini AJ, Michals A, Skotko BG, Fortea J, Khor B, et al. Death in People with Down syndrome: Mortality statistics and novel predictors in US Medicaid and Medicare enrolled adults. medRxiv. 2026. doi:10.64898/2026.07.17.26358090.
BibTeX
@article{tewolde2026-e7d4e2b2,
author = {Tewolde, S. and Rosellini, A. J. and Michals, A. and Skotko, B. G. and Fortea, J. and Khor, B. and Handelman, S. and Rubenstein, E.},
title = {{Death in People with Down syndrome: Mortality statistics and novel predictors in US Medicaid and Medicare enrolled adults}},
journal = {medRxiv},
year = {2026},
doi = {10.64898/2026.07.17.26358090},
url = {https://doi.org/10.64898/2026.07.17.26358090}
}
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