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Fibrodysplasia ossificans progressiva (FOP): Suspect-and-test checklist for clinicians

A one-page worksheet that turns the full Fibrodysplasia ossificans progressiva (FOP) diagnosis guide into something you can use at the point of care: what to look for, what to order, which results should not end the workup, and who else to test or refer.

Who it is forClinicians and care teams who may see Fibrodysplasia ossificans progressiva (FOP) before it is diagnosed, including primary care, the specialists named in the guide, and referral or genetics coordinators.
When to use itWhen Fibrodysplasia ossificans progressiva (FOP) is on the differential, when a patient has several red flags, or when you are preparing a referral or a second opinion.

How to use it, section by section

  1. Red flags present: Tick each finding the patient has. They are grouped by body system so you can scan quickly.
  2. Already labeled as: Tick earlier diagnoses on the chart that the sources say are often given first.
  3. Family to test: Note relatives who may need testing, and record when symptoms began and which specialists have already been seen.
  4. Testing, in order: Tick each test as you order it and write the result on its line. The order follows the published sources.
  5. Results that do not rule it out: A reminder of findings that can look reassuring but do not exclude Fibrodysplasia ossificans progressiva (FOP).
  6. Specialists: Tick the referral, then write who it went to and any notes.
Two ways to fill it inPrint it blank and write on it, or tick boxes and type on this screen first, then print or save as a PDF. Keep it with the chart or send it with the referral.
PrivacyNothing you type is sent or saved. It stays in this browser tab and disappears when you close it. Use patient initials, not full identifiers.

What it is not: Not a diagnostic score, a protocol or coding advice. It summarizes published sources, and clinical judgment and the treating clinician govern. Every point is sourced in the full Fibrodysplasia ossificans progressiva (FOP) guide.

One Letter page. Use your browser's print or save as PDF.Full guide with sources
Suspect-and-test checklist
Fibrodysplasia ossificans progressiva (FOP)

Malformed great toes plus tumor-like swellings. Defer biopsy, elective surgery and intramuscular injections until the diagnosis is confirmed.

ICD-10-CMM61.10 to M61.19Trial Friend for Clinicians

1Red flags present

Feet and hands

Swellings

After injury or a procedure

Joints and other signs

2Already labeled as

3Family to test

4Testing, in the order the sources describe

  1. Examine the great toes and thumbsBefore any invasive procedure.
    Result
  2. Toe radiographs and films of affected areasShort first metatarsal, single dysplastic phalanx; extraskeletal bone.
    Result
  3. Defer biopsy, elective surgery and IM injectionsICC: until the diagnosis is confirmed. Biopsy is never indicated.
    Result
  4. ACVR1 sequencingc.617G>A in more than 97%. Deletion/duplication testing not indicated.
    Result
  5. Gentle venipuncture onlyMinimal tourniquet time. Avoid arterial punctures and central lines.
    Result

5Results the sources say do not rule it out

  • Normal-looking toes. The malformation can be unilateral or absent in atypical FOP.
  • Scalp nodules that regress. They are early flare-ups.
  • Biopsy histology suggesting a tumor or fasciitis. Early lesions can look neoplastic.
  • No ossification yet. Young children have been confirmed by ACVR1 testing before any ossification.

6Specialists the sources name

Diagnosis codes: Myositis ossificans progressiva,: M61.10 unspecified site; M61.18 other site; M61.19 multiple sitesCodes patients often carry before diagnosis are listed in the online guide.
Full guide and sourcesEvery point here is sourced in the online guide, which also has a patient note to print.
Trial Friend, trialfriend.com/for-clinicians. Key sources: ICC medical guidelines (2025); GeneReviews (2024); Kitterman 2005 diagnostic error survey; Cui 2026 Chinese national cohort; Kaplan 2008 early diagnosis report; Piram 2011 French registry study; all 9 with links in the online guide. Checked November 10, 2026. A reference checklist for licensed clinicians that summarizes published sources. It is not a diagnostic tool, a score or a protocol, and it does not replace clinical judgment, local practice or the prescribing information. Not coding advice. Trial Friend never receives anything written or typed on this sheet.