Autosomal Dominant Hypocalcemia Types 1/2 Disease Monitoring Study

  • Research type

    Research Study

  • Full title

    Autosomal Dominant Hypocalcemia Types 1 And 2 (ADH1/2) Disease Monitoring Study (DMS)

  • IRAS ID

    311730

  • Contact name

    Raja Padidela

  • Contact email

    Raja.padidela@mft.nhs.uk

  • Sponsor organisation

    Calcilytix Therapeutics, Inc.

  • Clinicaltrials.gov Identifier

    NCT05227287

  • Duration of Study in the UK

    5 years, 0 months, 0 days

  • Research summary

    Autosomal Dominant Hypocalcaemia type 1 (ADH1) and type 2 (ADH2) are rare disorders which affect the calcium levels in the body. This disease is caused by the activation of variants of the CASR gene and GNA11 gene for ADH1 and ADH2, respectively. Both of these gene variants lead to low levels of calcium in the blood (hypocalcaemia). At present the disease is managed by balancing supplementation of calcium and active vitamin D with the known risk for calcifications, kidney stones and kidney failure. Thus study of this disease is expected to give researchers new information so that better treatment/disease management regimens may be developed in the future.

    This study, CLTX-305-901, sponsored by Calcilytix Therapeutics, Inc., is a global, multicentre, retrospective and prospective, non-interventional study to characterise disease presentation and progression in participants, with Autosomal Dominant Hypocalcaemia Types 1 and 2 (ADH1/2) by collecting demographic, biochemical, physiologic, disease severity and disease progression data. Participants will continue to receive standard of care treatment as directed by their treatment doctor/team, whilst participating in this study. No treatment will be provided to the participants by the Sponsor or the site's study team as part of the study.

    Participants from birth through to age 90 years who have a documented variant of the CASR or GNA11 gene will be eligible for enrolment, should they meet all the inclusion criteria and not meet any of the exclusion criteria. The study is expected to last approximately 5 years/60 months with participants undertaking physical examinations, completing questionnaires, blood collection/testing, genetic testing, electrocardiograms, 24-hour urine collections and imaging; such as DXA and CT scans and Kidney Ultrasounds.

  • REC name

    West Midlands - Solihull Research Ethics Committee

  • REC reference

    22/WM/0109

  • Date of REC Opinion

    20 Jun 2022

  • REC opinion

    Further Information Favourable Opinion