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Canadian national hypoparathyroidism registry: an overview of hypoparathyroidism in Canada

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Abstract

Purpose

To evaluate the epidemiology, presentation and management of hypoparathyroidism in Canada. Hypoparathyroidism is associated with significant morbidity and poor quality of life. We present baseline results from the Canadian National Hypoparathyroidism Registry, a prospective observational study evaluating hypoparathyroidism in Canada.

Methods

Our study enrolled 130 patients with hypoparathyroidism. Patients were followed every 6 months with clinical and lab assessments. We present baseline data in this manuscript.

Results

Seventy percent (91/130) of patients had postsurgical hypoparathyroidism, 30% (39/130) of patients had nonsurgical hypoparathyroidism due to autoimmune, genetic or idiopathic causes, and a molecular diagnosis was confirmed in 11 of these 39 patients. Pseudohypoparathyroidism was confirmed in 4/39 patients, DiGeorge syndrome in 2/39 patients, Barakat syndrome with a mutation in the GATA3 gene in 1/39, and activating mutations of the CASR gene in 3/39 patients with nonsurgical hypoparathyroidism. Renal complications with nephrocalcinosis or nephrolithiasis were present in 27% (14/52) of patients with postsurgical disease and 17% (4/24) of patients with nonsurgical hypoparathyroidism. Basal ganglia calcification was noted on imaging in 15% (n = 5/34) of patients with postsurgical hypoparathyroidism and 37% (n = 7/19) of patients with nonsurgical hypoparathyroidism.

Conclusions

Hypercalciuria was more commonly seen in those with renal complications of nephrocalcinosis, nephrolithiasis or CKD, and hyperphosphatemia was more commonly seen in those with basal ganglia calcification. Hospitalization occurred in 28% of those with postsurgical hypoparathyroidism and 46% of those with nonsurgical hypoparathyroidism. Hypoparathyroidism is associated with significant morbidity. Effective strategies to reduce the short-and long-term complications of hypoparathyroidism need to be developed and evaluated.

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Data availability

Data available upon request.

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Funding

No funding was received for the development of the Canadian National Hypoparathyroidism Registry or for the analysis of the data. Research grants received for unrelated research projects: A.K.: Alexion, Amgen, Takeda, Ascendis, Chugai, Radius, Ultragenyx. A.M.: Merck.

Author information

Authors and Affiliations

  1. McMaster University, Hamilton, ON, Canada

    Aliya A. Khan, Hajar AbuAlrob, Zubin Punthakee, Rafik El Werfalli, Hisham Al Kassem, Manoela Braga & James Edward Massey Young

  2. Bone Research and Education Centre, Oakville, ON, Canada

    Aliya A. Khan, Sharjil Hussain & Salman Iqbal

  3. University of Toronto, Toronto, ON, Canada

    Muhammad Shrayyef & Adam Millar

  4. Western University, London, ON, Canada

    Tayyab Khan, Terri Paul & Stan Van Uum

Authors
  1. Aliya A. Khan
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Corresponding author

Correspondence to Aliya A. Khan.

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The authors declare no competing interests.

Ethical approval

The ethical approval for the present study was obtained from the Hamilton Integrated Research Ethics Board HiREB (Project No: 14-664-D).

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Informed consent was obtained from all participants per GCP guidelines.

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Khan, A.A., AbuAlrob, H., Punthakee, Z. et al. Canadian national hypoparathyroidism registry: an overview of hypoparathyroidism in Canada. Endocrine 72, 553–561 (2021). https://doi.org/10.1007/s12020-021-02629-w

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  • DOI: https://doi.org/10.1007/s12020-021-02629-w

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