Status:

RECRUITING

A Study to Document and to Further Describe Long-term Safety and Effectiveness of Palovarotene in Participants With Fibrodysplasia Ossificans Progressiva (FOP)

Lead Sponsor:

Ipsen

Conditions:

Fibrodysplasia Ossificans Progressiva

Eligibility:

All Genders

8+ years

Brief Summary

The participants in this registry study will have fibrodysplasia ossificans progressiva (FOP). FOP is an ultra-rare, severely disabling disease characterized by new bone formation in areas of the bod...

Eligibility Criteria

Inclusion

  • Inclusion Criteria :
  • Adult or child with FOP who have been prescribed palovarotene (prior to and independently of the decision to enroll the patient in this registry study and as per local label) by their treating physician according to the locally approved product information;
  • Signed informed consent as per local regulations must be obtained and maintained. Consent/assent from the participant should be obtained as appropriate before any registry study data collection are conducted. If applicable, parents or legally authorized representatives must give signed informed consent.
  • Exclusion Criteria :
  • Currently participating in a palovarotene clinical trial;
  • Currently participating in any interventional clinical trial for FOP;
  • Have any contraindication to palovarotene as per the locally approved label (except for pregnant women who have previously received and discontinued palovarotene at any time during the pregnancy and who will be included for safety follow-up).

Exclusion

    Key Trial Info

    Start Date :

    December 5 2024

    Trial Type :

    OBSERVATIONAL

    Allocation :

    ESTIMATED

    End Date :

    December 5 2035

    Estimated Enrollment :

    100 Patients enrolled

    Trial Details

    Trial ID

    NCT06089616

    Start Date

    December 5 2024

    End Date

    December 5 2035

    Last Update

    December 31 2025

    Active Locations (5)

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    Page 1 of 2 (5 locations)

    1

    The Regents of the University of California

    San Francisco, California, United States, 94103

    2

    The Trustees of the University of Pennsylvania, Office of Clinical Research-Legal Services, Perelman School of Medicine

    Philadelphia, Pennsylvania, United States, 19104

    3

    Edmonton Clinic Health Academy (ECHA)- University of Alberta

    Edmonton, Canada

    4

    Bone Research and Education Centre

    Oakville, Canada

    A Study to Document and to Further Describe Long-term Safety and Effectiveness of Palovarotene in Participants With Fibrodysplasia Ossificans Progressiva (FOP) | DecenTrialz