Clinical Trials

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.

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The divisions of Pediatric Endocrinology and Pediatric Nephrology at Mass General Hospital for Children (MGHfC) are pleased to announce the Pediatric Bone and Mineral Metabolism Disorders (BAMM) Clinic. The BAMM Clinic is a virtual, multidisciplinary clinic that provides care to infants, children and adolescents with conditions such as low bone density, osteoporosis, vitamin D deficiency, rickets and osteomalacia, hypoparathyroidism and other disorders that affect bone health and mineral metabolism.

Our providers work collaboratively with each child’s primary care provider, appropriate specialists and, most importantly, the child and family to ensure the highest quality of care. For older adolescents, our providers can facilitate a seamless transition from pediatric to adult care to ensure ongoing care for their bone health.

To learn more about the BAMM Clinic at MGHfC, including how to schedule an appointment and members of the care team, please visit http://www.massgeneral.org/children/assets/pdf/program-overview-bone-and-mineral-patients.pdf  or call the Access and New Appointment Center at 888-644-3248. 

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NIH Research Study: Effects of PTH Replacement on Bone in Hypoparathyroidism (07-D-0016)

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:

  • Premenopausal women between 18 – 45 years of age or 
  • Postmenopausal women who are at least 53 years of age and have not had a menstrual cycle within the past 5 years or
  • Men 18 – 70 years of age
  • Diagnosed with hypoparathyroidism for at least one year. 

For more information, please contact the NIH Patient Recruitment and Public Liaison hotline at 1-800-411-1222 or prpl@cc.nih.gov.  Additional information about the study can be found at www.www.hypoparathyroidstudy.org.

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Harvard Medical School

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.

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CenterWatch Logo

 CenterWatch Clinical Trials Listing ServiceTM

CenterWatch first launched the Clinical Trials Listing Service in 1994 to assist patients in finding and volunteering for clinical trials. Today, CenterWatch has the largest online listing of actively recruiting clinical trials and is one of the most trusted resources for patients interested in clinical trial participation receiving more than 1.5 million unique patients visitors annually. To search our clinical trial listings and find other patient education resources http://www.centerwatch.com/ 

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To see if there are any other clinical trials taking place that we may not have heard of - check out the ClinicalTrials.gov website.

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