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.
There are several clinical trials taking place on hypoparathyroidism at this time; too many to list here so we recommend you check out the ClinicalTrials.gov website or CenterWatch (see information below) for the complete list of current and upcoming research protocols.
We were asked by some of our Medical Advisors to post info on their research protocols for your consideration and they are listed below.
Do you have hypoparathyroidism?
Living with hypoparathyroidism can be complicated. Your health concerns are personalized to your situation, and a treatment plan that is right for someone else may not be right for you.
If you or someone you know has hypoparathyroidism, you may want to learn more about the BALANCE clinical research study.
What is the purpose of the BALANCE study?
The BALANCE study is evaluating whether adding an investigational medication called recombinant human parathyroid hormone (rhPTH[1-84]) to standard hypoparathyroidism therapy (oral calcium and/or active vitamin D tablets) may help control the symptoms of hypoparathyroidism better than standard therapy alone.
Who can participate?
You may be able to join the BALANCE study if you:
- Are 18 to 85 years old
- Have had chronic hypoparathyroidism for at least 12 months
- Have two or more symptoms related to hypoparathyroidism
- Meet other criteria, which the study staff will discuss with you
For more information about the BALANCE study or to see if you might be eligible to participate, visit www.HypoparathyroidismResearch.com.
Do you suffer from “brain fog”?
We are conducting a study at Columbia University in hypoparathyroid patients to determine how brain function is altered by hypoparathyroidism.
The study involves an assessment of cognitive and emotional function using well-established tests, as well as a blood test.
If you are interested, please contact Dr. Mishaela Rubin at firstname.lastname@example.org
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.
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.
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/