The Association has always advocated participation in patient studies and other investigative medical initiatives. Medical research and patient participation is necessary if medical science is to be advanced, and patient’s quality of life improved.
Principal Investigator: Dr. Rachel Gafni, MD
Sponsoring Institute: Craniofacial and Skeletal Diseases Branch, NIDCR, National Institutes of Health
The primary purpose of this research study is to evaluate the effects of synthetic parathyroid hormone 1-34 (PTH) replacement therapy on bone in adults with hypoparathyroidism. After a 1-7 month period of calcium and calcitriol therapy, eligible subjects will be taken off of calcitriol and treated with PTH for 5 years, given as twice daily injections. All study visits will be at the NIH Clinical Center in Bethesda, Maryland for a total of 12 visits over a 5 ½ year period. Once PTH therapy has begun, follow-up inpatient or outpatient visits lasting from 2-10 days will be every 6 months. During the NIH visits participants will undergo several procedures, which may include blood tests, urine tests, x-rays, questionnaires, fitness tests, and removing a sample of bone from the hip (bone biopsy). Laboratory tests at local laboratories will be required in between NIH visits to monitor therapy. Transportation will be provided and there is no cost for participation or any tests performed at the NIH.
Patients must be:
For more information, please contact the NIH Patient Recruitment and Public Liaison hotline at 1-800-411-1222 or firstname.lastname@example.org. Additional information about the study can be found at www.www.hypoparathyroidstudy.org.
Drs. Michael Mannstadt and Harald Jueppner are conducting a study of causes of familial forms of hypoparathyroidism. They are looking for participants in which at 2 members of their family are affected by hypoparathyroidism. For more information, click here.
To see if there are any other clinical trials taking place that we may not have heard of - check out the ClinicalTrials.gov website.