Cohort
Ages are at the reference date (2026-10-31), or at death when that is earlier.
Sex
| Participants | ||
|---|---|---|
| Male | 39 | |
| Female | 19 |
Age band at the reference date
| Participants | ||
|---|---|---|
| 40-49 | 8 | |
| 50-59 | 20 | |
| 60-69 | held back for cell size | |
| 70-79 | 20 | |
| 80-89 | held back for cell size |
Race
| Participants | ||
|---|---|---|
| White | 23 | |
| Asian | 15 | |
| Other Race | 13 | |
| Black or African American | 7 |
Ethnicity
| Participants | ||
|---|---|---|
| Unknown | 58 |
Data volume
Records by category
| Records | ||
|---|---|---|
| documents | 323 | |
| encounters | 81 | |
| problems | 211 | |
| medications | 580 | |
| labs_vitals | 788 | |
| procedures | 78 | |
| diagnostic_reports | 58 | |
| notes | 174 |
Distinct codes by category
| Codes | ||
|---|---|---|
| encounters | 1 | |
| problems | 24 | |
| medications | 11 | |
| labs_vitals | 6 | |
| procedures | 6 | |
| diagnostic_reports | 1 |
Participants by number of records
| Participants | ||
|---|---|---|
| 10-49 | held back for cell size | |
| 50-99 | held back for cell size |
Records by source format
| Records | ||
|---|---|---|
| FHIR | 1,613 | |
| C-CDA | 415 | |
| Other or unknown | 178 | |
| HTML | 39 | |
| 29 | ||
| RTF | 19 |
Observation period
Time from the first to the last dated record for each participant, in bands.
Participants by observation period (first to last dated record)
| Participants | ||
|---|---|---|
| <1 year | 14 | |
| 1-2 years | held back for cell size | |
| 2-5 years | held back for cell size | |
| 5-10 years | 25 | |
| 10-20 years | 11 |
Activity over time
Records per calendar year and category.
| Year | encounters | problems | medications | labs_vitals | procedures | diagnostic_reports |
|---|---|---|---|---|---|---|
| 2011 | 0 | 3 | 0 | 0 | 0 | 0 |
| 2012 | 0 | 5 | 0 | 0 | 0 | 0 |
| 2013 | 0 | 9 | 0 | 0 | 0 | 0 |
| 2014 | 0 | 6 | 0 | 0 | 0 | 0 |
| 2015 | 0 | 10 | 0 | 0 | 0 | 0 |
| 2016 | 0 | 9 | 0 | 0 | 0 | 0 |
| 2017 | 0 | 10 | 0 | 0 | 0 | 0 |
| 2018 | 0 | 7 | 0 | 0 | 0 | 0 |
| 2019 | 0 | 7 | 0 | 0 | 0 | 0 |
| 2020 | 0 | 9 | 5 | 0 | 0 | 0 |
| 2021 | 3 | 22 | 63 | 50 | 0 | 10 |
| 2022 | 36 | 53 | 250 | 334 | 30 | 24 |
| 2023 | 29 | 56 | 229 | 332 | 29 | 23 |
| 2024 | 13 | 5 | 33 | 72 | 18 | 1 |
| 2025 | 0 | 0 | 0 | 0 | 1 | 0 |
Vocabularies
Coded records by vocabulary
| Codings | ||
|---|---|---|
| LOINC | 846 | |
| RxNorm | 520 | |
| ICD-10-CM | 211 | |
| SNOMED-CT | 175 | |
| FHIR encounter class | 81 | |
| HCPCSReleaseCodeSets | 60 | |
| CPT-4 | 18 |
ALS markers
Markers show what the records hold, not whether a value is correct. ALSFRS-R and FVC here are coded observations only; scores written in notes are counted by note_extraction.py.
Diagnosis from the earliest motor neuron disease code
| Participants | ||
|---|---|---|
| Amyotrophic lateral sclerosis | 46 | |
| Primary lateral sclerosis | 5 | |
| Progressive bulbar palsy | held back for cell size | |
| Other or unspecified motor neuron disease | held back for cell size |
Participants with each marker
| Participants | ||
|---|---|---|
| ALS medicine: Riluzole | 48 | |
| ALSFRS-R total recorded as a coded observation | 58 | |
| Death date recorded in the Patient resource | 10 | |
| Diagnostic report (pathology, radiology or laboratory) | 58 | |
| FVC percent predicted recorded as a coded observation | 58 | |
| Frontotemporal dementia code | 9 |
Top codes
Records are counts of rows; participant counts below k are held back.
LOINC: most frequent codes
| Code | Display | Category | Records | Participants |
|---|---|---|---|---|
2157-6 | Creatine kinase [Enzymatic activity/volume] in Serum or Plasma | labs_vitals | 139 | 58 |
2160-0 | Creatinine [Mass/volume] in Serum or Plasma | labs_vitals | 139 | 58 |
1751-7 | Albumin [Mass/volume] in Serum or Plasma | labs_vitals | 139 | 58 |
29463-7 | Body weight | labs_vitals | 139 | 58 |
82953-1 | Total score [ALSFRS-R] | labs_vitals | 116 | 58 |
19872-1 | FVC measured/predicted | labs_vitals | 116 | 58 |
11506-3 | Progress note | diagnostic_reports | 58 | 58 |
RxNorm: most frequent codes
| Code | Display | Category | Records | Participants |
|---|---|---|---|---|
35623 | riluzole | medications | 240 | 48 |
83367 | atorvastatin | medications | 36 | 12 |
1292 | baclofen | medications | 33 | 33 |
36567 | simvastatin | medications | 30 | 10 |
77492 | tamsulosin | medications | 30 | 10 |
7646 | omeprazole | medications | 30 | 10 |
6809 | metformin | medications | 30 | 10 |
36437 | sertraline | medications | 27 | 9 |
57258 | tizanidine | medications | 25 | 25 |
29046 | lisinopril | medications | 21 | 7 |
2418 | cholecalciferol | medications | 18 | 9 |
ICD-10-CM: most frequent codes
| Code | Display | Category | Records | Participants |
|---|---|---|---|---|
G12.21 | Amyotrophic lateral sclerosis | problems | 92 | 46 |
E78.00 | Pure hypercholesterolemia | problems | 12 | 12 |
E78.5 | Hyperlipidemia | problems | 10 | 10 |
N40.0 | Benign prostatic hyperplasia | problems | 10 | 10 |
K21.9 | Gastro-esophageal reflux disease | problems | 10 | 10 |
E11.9 | Type 2 diabetes mellitus | problems | 10 | 10 |
G12.23 | Primary lateral sclerosis | problems | 10 | 5 |
F32.9 | Depressive disorder | problems | 9 | 9 |
E55.9 | Vitamin D deficiency | problems | 9 | 9 |
G31.09 | Other frontotemporal dementia | problems | 9 | 9 |
G12.22 | Progressive bulbar palsy | problems | 8 | held back for cell size |
I10 | Essential hypertension | problems | 7 | 7 |
G12.20 | Motor neuron disease, unspecified | problems | 6 | held back for cell size |
Z87.891 | Personal history of nicotine dependence | problems | 5 | 5 |
Z91.82 | Personal history of military deployment | problems | 4 | held back for cell size |
SNOMED-CT: most frequent codes
| Code | Display | Category | Records | Participants |
|---|---|---|---|---|
86044005 | Amyotrophic lateral sclerosis | problems | 92 | 46 |
55822004 | Hyperlipidemia | problems | 22 | 16 |
266569009 | Benign prostatic hyperplasia | problems | 10 | 10 |
235595009 | Gastro-esophageal reflux disease | problems | 10 | 10 |
44054006 | Type 2 diabetes mellitus | problems | 10 | 10 |
35489007 | Depressive disorder | problems | 9 | 9 |
34713006 | Vitamin D deficiency | problems | 9 | 9 |
38341003 | Essential hypertension | problems | 7 | 7 |
230258005 | Motor neuron disease, unspecified | problems | 6 | held back for cell size |
FHIR encounter class: most frequent codes
| Code | Display | Category | Records | Participants |
|---|---|---|---|---|
AMB | ambulatory | encounters | 81 | 58 |
HCPCSReleaseCodeSets: most frequent codes
| Code | Display | Category | Records | Participants |
|---|---|---|---|---|
E0471 | Respiratory assist device, bi-level pressure capability, with backup rate | procedures | 28 | 28 |
E0482 | Cough stimulating device, alternating positive and negative airway pressure | procedures | 11 | 11 |
K0861 | Power wheelchair, group 3, multiple power option | procedures | 10 | 10 |
E0630 | Patient lift, hydraulic or mechanical | procedures | 7 | 7 |
E2510 | Speech generating device, synthesized speech, multiple methods | procedures | 4 | held back for cell size |
CPT-4: most frequent codes
| Code | Display | Category | Records | Participants |
|---|---|---|---|---|
43246 | Upper GI endoscopy with directed placement of percutaneous gastrostomy tube | procedures | 18 | 18 |
Participants
One row per participant, with pseudonyms assigned in sorted order. Demographics are not shown per participant.
| Participant | Records | Observation period | Categories with data | Source formats | ALS markers |
|---|---|---|---|---|---|
| PT-0001 | 10-49 | 5-10 years | 7 | C-CDA, FHIR, HTML, Other or unknown | 5 |
| PT-0002 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0003 | 10-49 | <1 year | 8 | C-CDA, FHIR, Other or unknown, RTF | 4 |
| PT-0004 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0005 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 5 |
| PT-0006 | 10-49 | 10-20 years | 8 | C-CDA, FHIR, Other or unknown, PDF, RTF | 3 |
| PT-0007 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0008 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0009 | 10-49 | 10-20 years | 7 | C-CDA, FHIR, Other or unknown, RTF | 4 |
| PT-0010 | 10-49 | 10-20 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 5 |
| PT-0011 | 10-49 | <1 year | 8 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0012 | 10-49 | 10-20 years | 7 | C-CDA, FHIR, Other or unknown, PDF, RTF | 4 |
| PT-0013 | 10-49 | <1 year | 8 | C-CDA, FHIR, HTML, Other or unknown | 3 |
| PT-0014 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 5 |
| PT-0015 | 10-49 | 5-10 years | 7 | C-CDA, FHIR, Other or unknown, RTF | 4 |
| PT-0016 | 10-49 | 1-2 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 5 |
| PT-0017 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0018 | 10-49 | 1-2 years | 8 | C-CDA, FHIR, Other or unknown, PDF, RTF | 5 |
| PT-0019 | 10-49 | 1-2 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0020 | 10-49 | 10-20 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0021 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, Other or unknown, RTF | 4 |
| PT-0022 | 10-49 | 10-20 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0023 | 10-49 | <1 year | 7 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0024 | 10-49 | <1 year | 8 | C-CDA, FHIR, Other or unknown, PDF, RTF | 4 |
| PT-0025 | 10-49 | 10-20 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 3 |
| PT-0026 | 10-49 | 2-5 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0027 | 10-49 | 2-5 years | 7 | C-CDA, FHIR, Other or unknown, RTF | 4 |
| PT-0028 | 10-49 | <1 year | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 6 |
| PT-0029 | 10-49 | 5-10 years | 7 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0030 | 10-49 | <1 year | 8 | C-CDA, FHIR, Other or unknown, PDF, RTF | 5 |
| PT-0031 | 10-49 | <1 year | 8 | C-CDA, FHIR, HTML, Other or unknown | 6 |
| PT-0032 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 5 |
| PT-0033 | 10-49 | 10-20 years | 8 | C-CDA, FHIR, Other or unknown, RTF | 4 |
| PT-0034 | 10-49 | <1 year | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 3 |
| PT-0035 | 10-49 | <1 year | 8 | C-CDA, FHIR, HTML, Other or unknown | 3 |
| PT-0036 | 10-49 | 10-20 years | 8 | C-CDA, FHIR, Other or unknown, PDF, RTF | 4 |
| PT-0037 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0038 | 10-49 | 5-10 years | 7 | C-CDA, FHIR, HTML, Other or unknown, PDF | 6 |
| PT-0039 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, Other or unknown, RTF | 4 |
| PT-0040 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 5 |
| PT-0041 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 3 |
| PT-0042 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, Other or unknown, PDF, RTF | 4 |
| PT-0043 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 5 |
| PT-0044 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0045 | 10-49 | 2-5 years | 8 | C-CDA, FHIR, Other or unknown, RTF | 4 |
| PT-0046 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0047 | 10-49 | 1-2 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0048 | 10-49 | <1 year | 7 | C-CDA, FHIR, Other or unknown, PDF, RTF | 4 |
| PT-0049 | 10-49 | 5-10 years | 7 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0050 | 10-49 | 10-20 years | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0051 | 50-99 | 10-20 years | 8 | C-CDA, FHIR, Other or unknown, RTF | 4 |
| PT-0052 | 10-49 | 5-10 years | 7 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0053 | 10-49 | <1 year | 8 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0054 | 10-49 | 5-10 years | 8 | C-CDA, FHIR, Other or unknown, PDF, RTF | 4 |
| PT-0055 | 10-49 | 1-2 years | 8 | C-CDA, FHIR, HTML, Other or unknown | 4 |
| PT-0056 | 10-49 | 5-10 years | 7 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |
| PT-0057 | 10-49 | <1 year | 8 | C-CDA, FHIR, Other or unknown, RTF | 3 |
| PT-0058 | 10-49 | <1 year | 8 | C-CDA, FHIR, HTML, Other or unknown, PDF | 4 |