Over half of UK patients surveyed with hypoparathyroidism dissatisfied with treatment, finds largest ever UK survey of the UK hypoparathyroidism community

• Joint survey conducted by Ascendis Pharma and Parathyroid UK finds that 56% of people surveyed with hypoparathyroidism were dissatisfied, or very dissatisfied, with their current treatment and its impacts on their health-related quality of life (HRQoL) and everyday life.
• The survey results highlight the need for action as Ascendis Pharma and partner organisations (the British Society for Endocrinology and Parathyroid UK) launch Seeds of Change - a global initiative to improve awareness and education around the symptoms, long-term risks and needs of the hypoparathyroidism patient population.

London, United Kingdom, March 24^th 2025 – Ascendis Pharma UK and Parathyroid UK have published the results of a joint survey of the UK hypoparathyroidism community looking at burden of therapy with 402 participants. The survey found that over half (56%) of people with hypoparathyroidism were dissatisfied, or very dissatisfied, with conventional calcium and active vitamin D therapy and its impacts on their health-related quality of life (HRQoL) and everyday life.

Hypoparathyroidism is a rare endocrine condition where the parathyroid glands cannot generate sufficient parathyroid hormone (PTH), leading to low levels of calcium in the blood (hypocalcemia) and an imbalance in essential minerals. The condition can cause an array of symptoms from muscle cramps, weakness, and confusion to more serious symptoms such as kidney disease and heart disease.

The survey also found that for 43.5% of respondents dissatisfaction and poor HRQoL were driven by the continued symptom burden (i.e. need for more effective treatments), the fear of long-term side effects (69.3%), and a lack of peer and clinician support (55.1%).

Despite the need for multiple daily medications, treatment burden was not the primary cause of dissatisfaction for hypoparathyroid patients. Instead, two concerns of significance were revealed in the survey results:

• Long-term health risks: most patients were concerned about complications associated with current treatment practices, particularly those related to heart and kidney function.
• Inadequate communication: A high percentage of respondents identified clinician-patient communication gaps, such as a failure to provide adequate guidance and support from medical professionals.

These findings highlight the urgent need for improved treatment options as well as improved education for patients and clinicians to inform better decision-making and quality of care. Liz Glenister, CEO, Parathyroid UK said: “Our survey findings demonstrate there is a significant burden associated with managing a hypoparathyroidism medication regimen. However, there is a greater unmet need for more effective treatment with reduced risk of long-term side effects. Free text responses about the lived experience with hypoparathyroidism also highlighted the lack of clinician support and clinician understanding around brain fog.”

The results of the study: ”Burden of managing hypoparathyroidism medication regimens: A patient survey” was presented this week at the British Society for Endocrinology’s annual conference as a new initiative is launched by Ascendis Pharma in the UK supported by Parathyroid UK and the British Society of Endocrinology.

Seeds of Change is an initiative that aims to improve education around the symptoms, long-term risks and needs of people suffering from chronic hypoparathyroidism. Through education and awareness, the initiative aims to make a positive difference in how the condition is understood and treated, with an emphasis on the necessity of treating symptoms and long-term complications as well as addressing the community's overall needs.

Ben Whitehouse, Managing Director of Ascendis Pharma UK, stated: "Seeds of Change captures the positive concept of taking action today for a brighter tomorrow. With this initiative we want to bring together people impacted by hypoparathyroidism and empower them to fight for a brighter future for those suffering from this condition.”

About Ascendis Pharma

Ascendis Pharma is applying its innovative TransCon technology platform to build a leading, fully integrated biopharma company focused on making a meaningful difference in patients’ lives. Guided by our core values of Patients, Science and Passion, we use our TransCon technologies to create new therapies. Ascendis is headquartered in Copenhagen, Denmark and has additional facilities in Europe and the United States, with the UK office in London.

Ascendis, Ascendis Pharma, the Ascendis Pharma logo, the company logo, and TransCon are trademarks owned by the Ascendis Pharma group. © March 2025 Ascendis Pharma A/S.

About Hypoparathyroidism

Hypoparathyroidism is an endocrine disease caused by insufficient levels of PTH, the primary regulator of calcium/phosphate balance in the body, acting directly on bone and kidneys and indirectly on intestines^1,2. Hypoparathyroidism is considered chronic if it persists >6 months following surgery per the 2016 Endocrine Society Guidelines, 2019 Canadian and International Consensus Statement, and 2022 European Society of Endocrinology Consensus Statement^1,3,4. Individuals with hypoparathyroidism may experience a range of severe and potentially life-threatening short-term and long-term complications, including neuromuscular irritability, renal complications, extra-skeletal calcifications, and cognitive impairment ^5-9.

UK-COMMPTH-2500032 | March 2025

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References:

1. Brandi ML, Bilezikian JP, Shoback D, et al. Management of Hypoparathyroidism: Summary Statement and Guidelines. J Clin Endocrinol Metab. Jun 2016;101(6):2273-83. doi:10.1210/jc.2015-3907
2. Mannstadt M, Bilezikian JP, Thakker RV, et al. Hypoparathyroidism. Nat Rev Dis Primers. Aug 31 2017;3:17055. doi:10.1038/nrdp.2017.55
3. Bollerslev J, Rejnmark L, Zahn A, et al. European Expert Consensus on Practical Management of Specific Aspects of Parathyroid Disorders in Adults and in Pregnancy: Recommendations of the ESE Educational Program of Parathyroid Disorders. Eur J Endocrinol. Feb 1 2022;186(2):R33-r63. doi:10.1530/eje-21-1044
4. Khan AA, Koch CA, Van Uum S, et al. Standards of care for hypoparathyroidism in adults: a Canadian and International Consensus. Eur J Endocrinol. Mar 2019;180(3):P1-p22. doi:10.1530/eje-18-0609
5. Shoback DM, Bilezikian JP, Costa AG, et al. Presentation of hypoparathyroidism: etiologies and clinical features. J Clin Endocrinol Metab.2016;101(6):2300-2312.
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7. Arlt W, Fremerey C, Callies F, et al. Well-being, mood and calcium homeostasis in patients with hypoparathyroidism receiving standard treatment with calcium and vitamin D. Eur J Endocrinol. 2002;146(2):215-222.
8. Cusano NE, Rubin MR, McMahon DJ, et al. The effect of PTH(1-84) on quality of life in hypoparathyroidism. J Clin Endocrinol Metab. 2013;98(6):2356-2361.
9. Bilezikian JP. Hypoparathyroidism. J Clin Endocrinol Metab. 2020;105(6):1722-1736.