The Role of the Patient Partnership in Designing Research on Neuropsychiatric Issues in Hypoparathyroidism.

Abstract

Hypoparathyroidism is a rare endocrine disease that is associated with hypocalcemia and insufficient parathyroid hormone (PTH) levels. Neuropsychiatric complaints are common in hypoparathyroidism. Yet there is a large knowledge gap in our understanding of cognitive dysfunction in hypoparathyroidism and partnering with patients is essential for filling this hole. Input from hypoparathyroid patients is needed to define objective, performance-based cognitive impairments. Creating patient advisory boards that provide input for planning clinical trials would enable patient perspectives to be shared. This would ensure that meaningful, standardized neuropsychological instruments that prioritize patients' cognitive concerns are selected. Patient partnership is also needed to understand the wide inter-individual variability of cognitive symptoms in hypoparathyroidism, as well as mechanisms aside from calcium shifts that might explain cognitive symptoms, such as low PTH itself, alterations in brain structure, or other hypoparathyroidism-associated comorbidities. With new PTH replacement therapies on the horizon, patient input about studying how these therapies impact, and maybe even reverse, cognitive impairment will also be critical. Ultimately, the inclusion of patient partners in hypoparathyroidism research will advance the design of neuropsychiatric studies and generate key input for understanding how to reduce the burden of this disease.