toxins/toxicants. We attempted to collect every newly diagnosed (incident) ALS patient in Ohio during a two-year

Overview

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Key numbers

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Elijah W. Stommel4, Maeve Tischbein4 & Walter G. Bradley6
diagnosed during 2016–2018 in Ohio. Due to incomplete case ascertainment and limitations of the
mortality data. We estimated that 119 total cases (95% CI (109, 130)) were not recruited, including
36 females (95% CI (31, 41)) and 83 males (95% CI (74, 99)), and were distributed unevenly across the
the case count and mortality count from r = 0.8494 to 0.9585 for the total, from 0.7573 to 0.8270 for
females, and from 0.6862 to 0.9292 for males. The advantage of this method in the spatial perspective
1:4001. The global incidence of ALS for all ages is estimated to be 0.78 per 100,000 person-years2. The age- and/
been reported to be 1.7–1.813,4. The incidence rates in Asia, South America, and the Caribbean are lower4. Such
differences offer insights into etiological factors5.
Department of Geography, Dartmouth College, Hanover, NH 03755, USA. 2Department of Biomedical Data
of Public Health and West China Fourth Hospital, Sichuan University, Chengdu City, Sichuan Province 610093,
China. 4Department of Neurology, Geisel School of Medicine, Dartmouth-Hitchcock Medical Center, Lebanon,
NH 03756, USA. 5Section of ALS and Related Disorders, Cleveland Clinic, Cleveland, OH 44195, USA. 6Department
of Neurology, Miller School of Medicine, University of Miami, Miami, FL 33136, USA. *email: xun.shi@
Female 128 163.08 35.08 (30.34, 39.82)
Male 155 236.20 81.20 (71.88, 96.58)
Total 283 399.28 116.28 (105.85, 126.81)
Table 1. Statistically estimated number of unrecruited ALS cases in Ohio during 2016–2018. The output from
index period from October 2016 through September 20186. The completeness of the Registry is fundamental to
achieving the aforementioned goals7. However, we were unable to trace every ALS case for at least two reasons:
(1) not all centers/physicians had developed collaborative agreements with the Registry, and (2) patients from
Under-ascertainment is common in surveillance data collection8, in part because the U.S. lacks a mandatory
reporting infrastructure for ALS disease5. Nelson et al. estimated that the completeness of ALS cases collected by
the US national administrative healthcare databases was 76% for the years 2002–20049, and Kaye et al. implied
that the National ALS Registry of the US may have missed more than 40% of cases10. Witte et al. found that in
the state of Georgia four data sources combined may have collected 90.7% of cases11. Jordan et al. used the death
certificate data to estimate that in Baltimore and Philadelphia more than 11% of ALS cases had been missed
during data collection efforts in those cities12. Preux et al. used three sources in Limousin (France) for the period
1994–1995 and estimated completeness of 65.7%13. Uenal et al. estimated a missing rate to be 18.9% in the ALS
registry for Swabia (Germany)14, consistent with the claim of Rosenbohm et al. that for Southern Germany the
clinical-epidemiological registry had collected 80% cases15.
inant method in literature is the capture-recapture process1,9,11,13–18. The basic idea of the capture-recapture
laborative agreements from a subset of the 20 + institutions in Ohio that may have diagnosed ALS cases. Second,
Statistically estimate the number of unrecruited ALS cases in Ohio during 2016–2018. The sta-
unrecruited cases from this phase of estimation is 35 (female) + 81 (male) = 116 (Table 1).
Spatially adjusted number of unrecruited ALS cases in Ohio during 2016–2018. For both female
unrecruited cases in Ohio is 36 for females, 83 for males, and 119 in total (Table 2).
Table 2 shows that the number of unrecruited male cases is more than two times the number of unrecruited
female cases. Unrecruited cases account for the majority of all cases in the target counties (78.26%, 69.75%, and
72.12% for females, males, and total, respectively). They also account for a substantial percentage in all cases
statewide (21.95%, 34.87%, and 29.60% for females, males, and total, respectively).
Figure 1 shows the spatial distribution of estimated unrecruited cases in Ohio. Figure 2 compares the county-

Methods (brief)

reporting infrastructure for ALS disease5. Nelson et al. estimated that the completeness of ALS cases collected by
the state of Georgia four data sources combined may have collected 90.7% of cases11. Jordan et al. used the death
clinical-epidemiological registry had collected 80% cases15.
this method is that the cases from each data source are random samples of all cases. Also, this method seems
from a given city or region, and thus are not a random sample of all ALS cases in Ohio. We only achieved col-
the capture-recapture method: the data from each source are random samples of all patients. Second and more
information collected has been published by Andrew et al.6. That study was approved by the Dartmouth-Hitch-
For each recruited case, we have collected the patient’s age and sex. For the present study, we have aggregated

Implications

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Update history

The five most recent substantive edits to this page, classified major (evidence or structure moved), correction (a published value or statement was wrong and has been fixed), or minor (narrative rewritten without changing the underlying evidence). Each description is derived from what the edit did to this page; the linked commit is the authoritative record, routine regeneration passes are excluded, and the full version history lives in git. When DOI minting comes online (see schema docs), each entry below will also link to a version-pinned DataCite DOI.

Commit	Date	Change	Description
3171d06	2026-08-02	major	1 section added
bc84bfc	2026-08-02	major	6 sections added; narrative text revised