UK Hypoparathyroidism Registry

Epidemiological Insights

The prevalence and incidence of hypoparathyroidism in the UK remain poorly characterized. A national registry would enable robust epidemiological studies, providing accurate data on disease burden. This information is crucial for healthcare planning, resource allocation, and identifying regional disparities in diagnosis and care.

ii) Standardizing Care

Variation in clinical practice is a major challenge in managing hypoparathyroidism. For example, treatment strategies for post-surgical hypoparathyroidism differ widely among UK clinicians (11). A registry would facilitate the development of standardized protocols by analyzing real-world treatment patterns and outcomes. This could reduce unwarranted variations in care and improve patient outcomes.

iii) Facilitating Research

A UK registry would serve as a resource for observational studies and clinical trials. By providing a centralized dataset, it would reduce recruitment barriers for research, enabling studies on novel therapies and interventions. For instance, emerging treatments like recombinant PTH (rhPTH) could be evaluated in a real-world context, complementing clinical trial data (12).

iv) Defining Clinical Endpoints

The registry should include primary and secondary clinical endpoints to assess disease burden and outcomes, as stated in the above sections.

v) Distinguishing the UK Registry

The UK Hypoparathyroidism Registry should build on the strengths of existing registries, such as PARADIGHM, the Swedish Hypoparathyroidism Registry, and the Danish Nationwide Registry, while addressing their limitations:

• Broader Inclusion Criteria: Unlike PARADIGHM, which focuses predominantly on patients receiving PTH replacement therapy, the UK registry should capture a more diverse patient population, including those on standard care.
• Comprehensive Data on Comorbidities: The UK registry should prioritize tracking long-term comorbidities like nephrocalcinosis, cardiovascular disease, and neurocognitive disorders, areas underrepresented in some existing registries.
• Integration with Electronic Health Records (EHRs): Leveraging the UK's National Health Service (NHS) infrastructure, the registry can integrate seamlessly with EHRs, ensuring real-time data updates and minimizing reporting burdens on clinicians.
• Patient-Centred Outcomes: Emphasis should be placed on patient-reported outcomes, including quality of life and treatment satisfaction, to ensure the registry reflects patient priorities.

vi) Empowering Patients

Patient involvement is central to the success of any registry. Engaging patients through advocacy groups such as Parathyroid UK could enhance registry participation and ensure that research priorities align with patient needs. Furthermore, registries can empower patients by providing them with information about their condition and fostering a sense of community.

Narendra Reddy

Jeremy Turner

Neil Gittoes

Vikki Stokes

Lavanya Pelluri

Christine May

Farhad Arshad

Sherwin Criseno

Sabapathy Balasubramanian, BAETS representative

Neil Sharma, BAETS representative

Liz Glenister, Parathyroid UK

Helen Hopkins, Parathyroid UK

Jessica Davis, SFE

Marian Schini

Afroze Abbas

Emmanuel Ejji

Gowri Ratyanake

Zaki Hassan Smith

Albana Sykja

Anna Milan

Tom Kurzawinski

The aims of this data registry are:

1. Epidemiological insights: To estimate the prevalence of hypoparathyroidism, including co-morbidity & mortality rates in the UK.
2. Standardizing care: To minimise variation in clinical practice; achieved by analysing real-world treatment patterns/outcomes & recommending standardized protocols.
3. Facilitating research: A UK registry would serve as a centralized dataset resource for observational studies and clinical trials, thereby reducing recruitment barriers for research and enabling studies on novel therapies/interventions.
4. Defining clinical endpoints: (to assess disease burden & outcomes)

Primary Endpoints:

1. i) Biochemical control (Adjusted Calcium, Phosphate, Creatinine, eGFR, 24-hr Urine Calcium)
2. ii) Mortality,

iii) Quality of life (measured by validated tools such as HPDQ, SF-36 etc)

Secondary Endpoints:

1. i) To estimate the prevalence of Hypoparathyroidism-associated complications
2. ii) Length of in-hospital stay to assess economic burden.
3. Empowering patients: Engaging patients through advocacy groups such as Parathyroid UK could enhance registry participation & ensure that research priorities align with patient needs. This would also be a new information dissemination platform whilst fostering a sense of community.

Potential Impact of a UK Hypoparathyroidism Registry

·         Improved Patient Outcomes

By identifying gaps in care and facilitating evidence-based interventions, a registry can improve health outcomes for patients with hypoparathyroidism. For example, data from PARADIGHM revealed suboptimal calcium management in many patients, prompting changes in clinical practice (13).

·         Economic Benefits

Understanding the economic burden of hypoparathyroidism—including direct healthcare costs and indirect costs such as lost productivity—can inform cost-effective interventions. A registry would provide the data needed for such analyses, supporting better resource allocation (14).

·         Advancing Global Research

A UK registry could collaborate with international initiatives, contributing to global efforts to understand hypoparathyroidism. Such collaboration would enhance the generalizability of findings and accelerate the development of new treatments.

December 2025 – December 2027

Data is made available to researchers, patient support groups, pharmaceutical or medical device companies, and other health care professionals via the data access request form in line with the data access policy of the Society for Endocrinology.

You can find more information about governance here. 

NA