Executive Summary
A leadership view of where systemic mastocytosis care gaps occur, why they happen, and which tab to open to act on each finding.
Patients impacted
1,981
2,000 in current cohort
Active gap rules
22
Critical findings
6
Estimated patients freed
1,863
Sum of top 5 recommended actions
Top care gaps
Ranked by patient impact (volume × severity). Each row links to the tab where you can act.
- No KIT D816V test on recordCritical1,056 pts · 52.8% of cohort · stage: Diagnosis · PCPWhy this happens
- • Repeat ED visits without outpatient handoff652
- • Biomarker testing never ordered575
- • Tolerability or access barrier on therapy451
- Multiple ED visits before SM diagnosisHigh1,239 pts · 62% of cohort · stage: Diagnosis · PCPWhy this happens
- • Repeat ED visits without outpatient handoff1239
- • Tolerability or access barrier on therapy582
- • Biomarker testing never ordered350
- Recurrent anaphylaxis without epinephrine prescriptionCritical755 pts · 37.8% of cohort · stage: Treatment · PCPWhy this happens
- • Tolerability or access barrier on therapy505
- • Repeat ED visits without outpatient handoff476
- • Biomarker testing never ordered184
- Therapy discontinuation without replacementHigh942 pts · 47.1% of cohort · stage: Treatment · PCPWhy this happens
- • Tolerability or access barrier on therapy942
- • Repeat ED visits without outpatient handoff582
- • Biomarker testing never ordered264
- Elevated tryptase without hematology referralCritical666 pts · 33.3% of cohort · stage: Diagnosis · PCPWhy this happens
- • Repeat ED visits without outpatient handoff410
- • Tolerability or access barrier on therapy357
- • Pathway delay, no single dominant cause81
- No serum tryptase test on recordCritical575 pts · 28.8% of cohort · stage: Diagnosis · PCPWhy this happens
- • Biomarker testing never ordered575
- • Repeat ED visits without outpatient handoff350
- • Tolerability or access barrier on therapy264
Pathway stage load
RAG by % of cohort with at least one gap at each stage.
- Pre-diagnosis207 · 10%
- Diagnosis1,939 · 97%
- Treatment1,333 · 67%
- Outcome0 · 0%
By gap category
- Testing gap1,551 pts · 5 rules
- Diagnostic miss1,729 pts · 7 rules
- Treatment gap1,333 pts · 5 rules
- Referral leakage207 pts · 5 rules
What should we do next?
Auto-generated from the highest-impact gaps. Click through to the tab that owns the action.
- 1Close testing gap: No KIT D816V test on recordWhy: Repeat ED visits without outpatient handoffPts freed422
- 2Trigger biomarker workup for "Multiple ED visits before SM diagnosis"Why: Repeat ED visits without outpatient handoffPts freed496
- 3Initiate or restore therapy: Recurrent anaphylaxis without epinephrine prescriptionWhy: Tolerability or access barrier on therapyPts freed302
- 4Initiate or restore therapy: Therapy discontinuation without replacementWhy: Tolerability or access barrier on therapyPts freed377
- 5Trigger biomarker workup for "Elevated tryptase without hematology referral"Why: Repeat ED visits without outpatient handoffPts freed266
Off-label opportunity
Where labelled therapy may not fit and an alternative could be considered.
See the Off-Label Lens for ISM-high symptom burden, smouldering patients with rising signals, and AdvSM patients not on a TKI.
Open Off-Label Lens