{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,30]],"date-time":"2025-07-30T13:55:15Z","timestamp":1753883715649,"version":"3.41.2"},"reference-count":8,"publisher":"The Endocrine Society","issue":"7","license":[{"start":{"date-parts":[[2023,5,23]],"date-time":"2023-05-23T00:00:00Z","timestamp":1684800000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2023,6,5]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:p>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\u2019 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.<\/jats:p>","DOI":"10.1210\/jendso\/bvad068","type":"journal-article","created":{"date-parts":[[2023,5,23]],"date-time":"2023-05-23T17:12:49Z","timestamp":1684861969000},"source":"Crossref","is-referenced-by-count":1,"title":["The Role of the Patient Partnership in Designing Research on Neuropsychiatric Issues in Hypoparathyroidism"],"prefix":"10.1210","volume":"7","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7818-2121","authenticated-orcid":false,"given":"Mishaela R","family":"Rubin","sequence":"first","affiliation":[{"name":"Metabolic Bone Disease Unit, Department of Medicine, Vagelos College of Physicians & Surgeons, Columbia University , New York, NY 10032 , USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"80","published-online":{"date-parts":[[2023,5,23]]},"reference":[{"issue":"2","key":"2023061411234355500_bvad068-B1","doi-asserted-by":"crossref","first-page":"151","DOI":"10.1007\/s40271-019-00388-5","article-title":"Assessing the patient experience of hypoparathyroidism symptoms: development of the Hypoparathyroidism Patient Experience Scale-Symptom (HPES-Symptom)","volume":"13","author":"Brod","year":"2020","journal-title":"Patient"},{"issue":"12","key":"2023061411234355500_bvad068-B2","doi-asserted-by":"crossref","first-page":"2642","DOI":"10.1002\/jbmr.4673","article-title":"Complications, symptoms, presurgical predictors in patients with chronic hypoparathyroidism: a systematic review","volume":"37","author":"Yao","year":"2022","journal-title":"J Bone Miner 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trial","volume":"38","author":"Khan","year":"2023","journal-title":"J Bone Miner Res"},{"issue":"6","key":"2023061411234355500_bvad068-B6","doi-asserted-by":"crossref","first-page":"895","DOI":"10.1530\/EJE-12-0946","article-title":"Neuropsychological dysfunction in idiopathic hypoparathyroidism and its relationship with intracranial calcification and serum total calcium","volume":"168","author":"Aggarwal","year":"2013","journal-title":"Eur J Endocrinol"},{"issue":"3","key":"2023061411234355500_bvad068-B7","doi-asserted-by":"crossref","DOI":"10.1210\/jendso\/bvac002","article-title":"A pilot study of cognition among hypoparathyroid adults","volume":"6","author":"Rubin","year":"2022","journal-title":"J Endocr Soc"},{"issue":"10","key":"2023061411234355500_bvad068-B8","doi-asserted-by":"crossref","first-page":"1909","DOI":"10.1007\/s40618-022-01822-6","article-title":"Serum calcium levels are associated with cognitive function in hypoparathyroidism: a neuropsychological and biochemical study in an Italian cohort of patients with chronic post-surgical hypoparathyroidism","volume":"45","author":"Saponaro","year":"2022","journal-title":"J Endocrinol Invest"}],"container-title":["Journal of the Endocrine 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