Candidates in each content category
Participants with at least one candidate match in each category. A candidate is text that matched a pattern; it still needs review.
| Content category | Participants with a candidate | |
|---|---|---|
| ALSFRS-R | 58 | |
| Pulmonary | 58 | |
| Diagnosis | 58 | |
| Family history and genetics | 58 | |
| ECAS and FTD | 58 | |
| Treatment milestones | 56 |
All patterns
Context cues are checked in the words just before each match: a negation such as "no" or "negative for", a family member, uncertainty such as "possible" or "rule out", or a historical marker such as "history of". A cue does not mean the match is wrong; it marks candidates to read first.
| Pattern | Category | Participants | Candidates | Share of candidates with a context cue |
|---|---|---|---|---|
alsfrs_r_totalALSFRS-R total score, range 0 to 48 | ALSFRS-R | 58 | 197 | none |
alsfrs_r_bulbarALSFRS-R bulbar subscore, range 0 to 12 | ALSFRS-R | 58 | 197 | none |
alsfrs_r_fine_motorALSFRS-R fine motor (upper extremity) subscore, range 0 to 12 | ALSFRS-R | 58 | 197 | none |
alsfrs_r_gross_motorALSFRS-R gross motor (lower extremity) subscore, range 0 to 12 | ALSFRS-R | 58 | 197 | none |
alsfrs_r_respiratoryALSFRS-R respiratory subscore, range 0 to 12 | ALSFRS-R | 58 | 197 | none |
ecas_totalECAS total, maximum 136 | ECAS and FTD | 58 | 197 | none |
ftd_spectrumFrontotemporal-spectrum involvement mention | ECAS and FTD | 17 | 65 | possible family history 54% |
el_escorialEl Escorial or Awaji-Shima diagnostic certainty | Diagnosis | 46 | 158 | none |
onset_regionSite of disease onset | Diagnosis | 58 | 197 | none |
family_history_negativeNegative family history | Family history and genetics | 28 | 96 | possible family history 100% |
family_history_positiveAffected relative with ALS, MND or FTD (positive family history) | Family history and genetics | 30 | 101 | possible family history 100% |
genetic_mutationALS-associated gene with a reported variant or expansion | Family history and genetics | 49 | 68 | none |
fvc_percent_predictedForced vital capacity, percent predicted | Pulmonary | 58 | 197 | none |
peg_placement_dateDate of PEG or gastrostomy tube placement | Treatment milestones | 18 | 53 | none |
niv_initiation_dateDate non-invasive ventilation started | Treatment milestones | 28 | 89 | none |
riluzole_start_dateDate riluzole was started | Treatment milestones | 48 | 162 | none |
edaravone_start_dateDate edaravone was started | Treatment milestones | 14 | 46 | none |
tracheostomy_dateDate of tracheostomy | Treatment milestones | held back for cell size | held back for cell size | held back for cell size |
Captured values
Counts are participants, not records.
Numeric values, one per participant
| Pattern | Participants | 25th percentile | Median | 75th percentile |
|---|---|---|---|---|
alsfrs_r_bulbar | 58 | 7 | 8 | 9 |
alsfrs_r_fine_motor | 58 | 6 | 7 | 8 |
alsfrs_r_gross_motor | 58 | 6 | 7 | 8 |
alsfrs_r_respiratory | 58 | 6.25 | 8 | 9 |
alsfrs_r_total | 58 | 25.25 | 30.5 | 33 |
ecas_total | 58 | 94 | 101 | 110.75 |
fvc_percent_predicted | 58 | 64.5 | 70 | 78 |
Minimum and maximum are not shown because a single extreme value belongs to one participant. The number is the first number in the captured text.
Categorical values
onset_region
| Captured value | Participants |
|---|---|
| limb | 19 |
| bulbar | 10 |
| upper limb | 10 |
| lower limb | 10 |
| respiratory | 9 |
genetic_mutation
| Captured value | Participants |
|---|---|
| c9orf72 | 49 |
| fus | 10 |
el_escorial
| Captured value | Participants |
|---|---|
| clinically possible | 12 |
| lab-supported probable | 12 |
| clinically probable | 11 |
| clinically definite | 11 |
family_history_positive
| Captured value | Participants |
|---|---|
| als | 20 |
| frontotemporal dementia | 10 |
family_history_negative
| Captured value | Participants |
|---|---|
| no family history of als | 18 |
| no known family history of neurodegenerative disease | 10 |
ftd_spectrum
| Captured value | Participants |
|---|---|
| frontotemporal dementia | 10 |
| behavioral variant ftd | 9 |
Excerpts for pattern tuning
Up to three excerpts per pattern, each from a different participant. EX-NNNN pseudonyms are assigned in this file only.
alsfrs_r_bulbar
EX-0001 · ccda_section · no cue found
...a for clinically possible ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6, respiratory 8. Pulmonary func...EX-0002 · ccda_section · no cue found
...or lab-supported probable ALS. ALSFRS-R total score: 32/48. ALSFRS-R subscores: bulbar 7, fine motor 8, gross motor 7, respiratory 10. Pulmonary fun...EX-0003 · ccda_section · no cue found
...a for clinically probable ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6, respiratory 8. Pulmonary func...alsfrs_r_fine_motor
EX-0001 · ccda_section · no cue found
...a for clinically possible ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6, respiratory 8. Pulmonary function today: FV...EX-0002 · ccda_section · no cue found
...or lab-supported probable ALS. ALSFRS-R total score: 32/48. ALSFRS-R subscores: bulbar 7, fine motor 8, gross motor 7, respiratory 10. Pulmonary function today: F...EX-0003 · ccda_section · no cue found
...a for clinically probable ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6, respiratory 8. Pulmonary function today: FV...alsfrs_r_gross_motor
EX-0001 · ccda_section · no cue found
...a for clinically possible ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6, respiratory 8. Pulmonary function today: FVC 2.1 L (59% pr...EX-0002 · ccda_section · no cue found
...or lab-supported probable ALS. ALSFRS-R total score: 32/48. ALSFRS-R subscores: bulbar 7, fine motor 8, gross motor 7, respiratory 10. Pulmonary function today: FVC 2.7 L (74% p...EX-0003 · ccda_section · no cue found
...a for clinically probable ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6, respiratory 8. Pulmonary function today: FVC 2.3 L (64% pr...alsfrs_r_respiratory
EX-0001 · ccda_section · no cue found
...a for clinically possible ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6, respiratory 8. Pulmonary function today: FVC 2.1 L (59% predicted), seate...EX-0002 · ccda_section · no cue found
...or lab-supported probable ALS. ALSFRS-R total score: 32/48. ALSFRS-R subscores: bulbar 7, fine motor 8, gross motor 7, respiratory 10. Pulmonary function today: FVC 2.7 L (74% predicted), seate...EX-0003 · ccda_section · no cue found
...a for clinically probable ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6, respiratory 8. Pulmonary function today: FVC 2.3 L (64% predicted), seate...alsfrs_r_total
EX-0001 · ccda_section · no cue found
...s revised El Escorial criteria for clinically possible ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6,...EX-0002 · ccda_section · no cue found
...evised El Escorial criteria for lab-supported probable ALS. ALSFRS-R total score: 32/48. ALSFRS-R subscores: bulbar 7, fine motor 8, gross motor 7,...EX-0003 · ccda_section · no cue found
...s revised El Escorial criteria for clinically probable ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6, fine motor 6, gross motor 6,...ecas_total
EX-0001 · ccda_section · no cue found
...started riluzole 50 mg twice daily on [date]. Cognition: ECAS total 101/136. No known family history of neurodegenerative disease. Soci...EX-0002 · ccda_section · no cue found
...ated on [date] for nocturnal hypoventilation. Cognition: ECAS total 118/136. Mother had frontotemporal dementia. Social history: Worked...EX-0003 · ccda_section · no cue found
...ted on [date] for nocturnal hypoventilation. Cognition: ECAS total 120/136. Family history of ALS in a paternal aunt. Social history:...edaravone_start_date
EX-0004 · ccda_section · no cue found
...dications: started riluzole 50 mg twice daily on [date]. Edaravone started [date], oral suspension daily. Cognition: ECAS total 105/136. Fath...EX-0007 · ccda_section · no cue found
...edications: started riluzole 50 mg twice daily on [date]. Edaravone started [date], oral suspension daily. BiPAP initiated on [date] for n...EX-0008 · ccda_section · no cue found
...dications: started riluzole 50 mg twice daily on [date]. Edaravone started [date], oral suspension daily. Cognition: ECAS total 97/136. Mothe...el_escorial
EX-0001 · ccda_section · no cue found
...onset February 2022. Meets revised El Escorial criteria for clinically possible ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6,...EX-0002 · ccda_section · no cue found
...om onset March 2023. Meets revised El Escorial criteria for lab-supported probable ALS. ALSFRS-R total score: 32/48. ALSFRS-R subscores: bulbar 7,...EX-0003 · ccda_section · no cue found
...onset November 2021. Meets revised El Escorial criteria for clinically probable ALS. ALSFRS-R total score: 26/48. ALSFRS-R subscores: bulbar 6,...family_history_negative
EX-0001 · ccda_section · possible family history
...mg twice daily on [date]. Cognition: ECAS total 101/136. No known family history of neurodegenerative disease. Social history: Former smoker, 20 pack-years, quit 2010. E...EX-0005 · ccda_section · possible family history
...or nocturnal hypoventilation. Cognition: ECAS total 89/136. No family history of ALS or dementia. Social history: Occupational exposure to lead...EX-0006 · ccda_section · possible family history
...5 L (69% predicted), seated. Cognition: ECAS total 119/136. No family history of ALS or dementia. Social history: Lived near a lake with recurri...family_history_positive
EX-0002 · ccda_section · possible family history
...r nocturnal hypoventilation. Cognition: ECAS total 118/136. Mother had frontotemporal dementia. Social history: Worked as a farmer with pesticide exposure...EX-0003 · ccda_section · possible family history
...r nocturnal hypoventilation. Cognition: ECAS total 120/136. Family history of ALS in a paternal aunt. Social history: Played college football...EX-0004 · ccda_section · possible family history
...0-28, oral suspension daily. Cognition: ECAS total 105/136. Father was diagnosed with ALS at age 61. Social history: Worked as an electrician for 25...ftd_spectrum
EX-0002 · ccda_section · possible family history
...hypoventilation. Cognition: ECAS total 118/136. Mother had frontotemporal dementia. Social history: Worked as a farmer with pesticide exposure...EX-0008 · ccda_section · possible family history
...suspension daily. Cognition: ECAS total 97/136. Mother had frontotemporal dementia. Social history: Never smoker. No military service. Equipme...EX-0009 · ccda_section · no cue found
...r nocturnal hypoventilation. Cognition: ECAS total 114/136. Behavioral variant FTD features noted by family. Father was diagnosed with ALS at...fvc_percent_predicted
EX-0001 · ccda_section · no cue found
...6, gross motor 6, respiratory 8. Pulmonary function today: FVC 2.1 L (59% predicted), seated. Medications: started riluzole 50 mg twice daily o...EX-0002 · ccda_section · no cue found
...8, gross motor 7, respiratory 10. Pulmonary function today: FVC 2.7 L (74% predicted), seated. Medications: started riluzole 50 mg twice daily o...EX-0003 · ccda_section · no cue found
...6, gross motor 6, respiratory 8. Pulmonary function today: FVC 2.3 L (64% predicted), seated. Medications: started riluzole 50 mg twice daily o...genetic_mutation
EX-0001 · document:unknown · no cue found
...REPORT Report date: [date] Test: ALS gene panel with C9orf72 repeat-primed PCR (synthetic laboratory). Result: Genetic testing:...EX-0002 · document:pdf · no cue found
...REPORT Report date: [date] Test: ALS gene panel with C9orf72 repeat-primed PCR (synthetic laboratory). Result: Genetic testing:...EX-0003 · document:unknown · no cue found
...REPORT Report date: [date] Test: ALS gene panel with C9orf72 repeat-primed PCR (synthetic laboratory). Result: Genetic testing:...niv_initiation_date
EX-0002 · ccda_section · no cue found
...ications: started riluzole 50 mg twice daily on [date]. BiPAP initiated on [date] for nocturnal hypoventilation. Cognition: ECAS total 118/13...EX-0003 · ccda_section · no cue found
...dications: started riluzole 50 mg twice daily on [date]. BiPAP initiated on [date] for nocturnal hypoventilation. Cognition: ECAS total 120/13...EX-0005 · ccda_section · no cue found
...[date]. PEG tube placed on [date]; tolerating feeds. BiPAP initiated on [date] for nocturnal hypoventilation. Cognition: ECAS total 89/136...onset_region
EX-0001 · ccda_section · no cue found
...sis: amyotrophic lateral sclerosis, diagnosed October 2022; limb-onset, symptom onset February 2022. Meets revised El Escorial cri...EX-0002 · ccda_section · no cue found
...sis: amyotrophic lateral sclerosis, diagnosed October 2023; bulbar-onset, symptom onset March 2023. Meets revised El Escorial criter...EX-0003 · ccda_section · no cue found
...nosis: amyotrophic lateral sclerosis, diagnosed April 2023; upper limb onset, symptom onset November 2021. Meets revised El Escorial cri...peg_placement_date
EX-0005 · ccda_section · no cue found
...dications: started riluzole 50 mg twice daily on [date]. PEG tube placed on [date]; tolerating feeds. BiPAP initiated on [date] for nocturn...EX-0009 · document:html_fragment · no cue found
.../2024. Edaravone started [date], oral suspension daily. PEG tube placed on [date]; tolerating feeds. BiPAP initiated on [date] for nocturn...EX-0010 · document:html_fragment · no cue found
...dications: started riluzole 50 mg twice daily on [date]. PEG tube placed on [date]; tolerating feeds. BiPAP initiated on [date] for nocturna...riluzole_start_date
EX-0001 · ccda_section · no cue found
...tion today: FVC 2.1 L (59% predicted), seated. Medications: started riluzole 50 mg twice daily on [date]. Cognition: ECAS total 101/136. No known family history of...EX-0002 · ccda_section · no cue found
...tion today: FVC 2.7 L (74% predicted), seated. Medications: started riluzole 50 mg twice daily on [date]. BiPAP initiated on [date] for nocturnal hypoventilation...EX-0003 · ccda_section · no cue found
...tion today: FVC 2.3 L (64% predicted), seated. Medications: started riluzole 50 mg twice daily on [date]. BiPAP initiated on [date] for nocturnal hypoventilatio...About these dashboards
note_extraction.py searches C-CDA section text, decoded documents (RTF, PDF, HTML, plain text) and text attached to FHIR DiagnosticReport, DocumentReference and Binary resources. Every match is written to note_extractions.csv with its content category, a context cue and review_status needs_review.
The patterns are seed patterns for ALS registries. Check each pattern against a sample of real documents from each contributing health system, and have a reviewer confirm candidates against the source before any value is used in analysis.
Settings: k = 5. Generated 2026-11-13 12:52 UTC.