Treatment of patients with Primary Familial Brain Calcification with etidronate

  • Research type

    Research Study

  • Full title

    A randomized, placebo-controlled, double-blind trial to study the effects of Etidronate on ectopic CALCIfication in FAhr’s Disease or syndrome: CALCIFADE trial

  • IRAS ID

    1009530

  • Contact name

    Birgitta Snijders

  • Contact email

    b.m.g.snijders@umcutrecht.nl

  • Sponsor organisation

    University Medical Center (UMC) Utrecht

  • Eudract number

    2022-003299-17

  • ISRCTN Number

    ISRCTN10492452

  • Clinicaltrials.gov Identifier

    NCT05662111

  • Research summary

    Fahr's disease and syndrome are rare disorders leading to calcification of the small arteries in deep regions of the brain (basal ganglia), resulting in a wide range of symptoms, including cognitive decline, movement disorders and neuropsychiatric symptoms. No cure is available. Studies have shown the potential of treatment of these abnormal vascular calcifications with bisphosphonates, a group of medications used to treat osteoporosis and similar diseases. The CALCIFADE trial is a randomised, placebo-controlled, double-blind trial which evaluates the effects of etidronate 20 mg/kg during 12 months follow-up in patients aged ≥ 18 years with Fahr's disease or syndrome. Etidronate and placebo are administered in capsules daily for two weeks on followed by ten weeks off. The CALCIFADE trial has started in April 2023 and is currently being conducted at the outpatient clinic of the University Medical Center Utrecht, The Netherlands. The University College London Hospital, United Kingdom, will be added as a second study site. The primary endpoint is the change in cognitive functioning after 12 months of treatment. Secondary endpoints are the change in mobility, neuropsychiatric symptoms, volume of brain calcifications, dependence in activities of daily living, and quality of life.

  • REC name

    London - Central Research Ethics Committee

  • REC reference

    24/LO/0870

  • Date of REC Opinion

    5 Feb 2025

  • REC opinion

    Further Information Favourable Opinion