Status:

RECRUITING

DEnosumab for the Treatment of FIbrous Dysplasia/McCune-Albright Syndrome in Adults (DeFiD)

Lead Sponsor:

Natasha Appelman-Dijkstra

Conditions:

Fibrous Dysplasia

McCune Albright Syndrome

Eligibility:

All Genders

18+ years

Phase:

PHASE4

Brief Summary

Fibrous Dysplasia/McCune-Albright syndrome (FD/MAS) is a rare disease, consisting of the replacement of normal bone tissue with fibrous tissue. FD lesions may be isolated in one or more bones or may b...

Detailed Description

Eligible patients will be randomized to treatment with either subcutaneous Dmab 120mg or placebo at baseline and 3 months in a blinded fashion. At 6 months, after 2 injections, patients with pain scor...

Eligibility Criteria

Inclusion

  • Symptomatic patients with established diagnosis of FD/MAS and closed growth plates(\>18 years)
  • Pain in the region of an FD localization, not responding to adequate pain treatment and without mechanical component e.g. impending fracture
  • Pain score from FD lesion for maximum or average pain on VAS ≥ 4
  • Increased lesional activity defined as increased bone turnover markers (ALP, P1NP or CTX) or increased activity on Na\[18F\]-PET/CT or bone scintigraphy in at least one lesion
  • Normal levels of calcium, parathyroid hormone and vitamin D (supplementation is allowed)
  • Treated hypophosphatemia (defined as \>0.7 at two separate measures)
  • good dental health (last check within the last 12 months)

Exclusion

  • Active pregnancy wish, pregnancy or nursing
  • Pain not related to FD
  • Uncontrolled endocrine disease
  • Untreated vitamin D deficiency, hypocalcemia or hypophosphatemia
  • Previous use of bisphosphonates or Dmab \< 6 months before inclusion ('6 months wash out')
  • Previously reported severe side effects on Dmab
  • Inability to fulfil study requirements
  • Poor untreated dental health without intention to get treatment
  • Treatment with other bone influencing drugs, such as high doses corticosteroids

Key Trial Info

Start Date :

June 13 2023

Trial Type :

INTERVENTIONAL

Allocation :

ESTIMATED

End Date :

December 1 2028

Estimated Enrollment :

82 Patients enrolled

Trial Details

Trial ID

NCT05966064

Start Date

June 13 2023

End Date

December 1 2028

Last Update

January 29 2025

Active Locations (1)

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Leiden University Medical Center

Leiden, Netherlands