Clinical Trials/Research

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 resesarch protocols for your consideration and they are listed below.

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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.

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INTERVIEW STUDY ON PATIENTS’ EXPERIENCES WITH HYPOPARATHYROIDISM

The Brod Group (www.thebrodgroup.net), a science-based health outcomes research group, is looking for participants for individual telephone interviews or focus groups to learn more about the impact of hypoparathyroidism on functioning, well-being and daily life. 

 We would like to talk to:

  •  Adults, aged 18 years or older, with hypoparathyroidism for ≥ 6 months (post-surgical) or ≥ 12 months (auto-immune or idiopathic).
  •  Stable on standard-of-care for ≥ 3 months (having infrequent severe hypo- or hypercalcemia).
  •  Must NOT have CASR gene mutation or pseudohypoparathyroidism.

Participation in the study will include:

  • Either a one-hour telephone interview OR a two-hour in-person focus group (New York or San Francisco).
  • We will ask your thoughts and experiences with hypoparathyroidism in daily life, including general functioning and well-being.
  • What you say during the interview or focus group will not be shared with your doctor or other healthcare provider and will only be used to improve our understanding of the experiences people with hypoparathyroidism.
  • You will receive $100 USD for participating in an individual telephone interview or $125 USD for participating in a focus group.

If you are interested in participating or have any questions about the study, please contact Robyn Sayner, a Research Scientist with The Brod Group, via email at robyn@thebrodgroup.net  or by telephone at (415) 902-4324.

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Do you have hypoparathyroidism?

You may qualify for a new clinical research study. 

Brain fog. Memory issues. Fatigue. Anxiety. These are some of the common symptoms for people dealing with hypoparathyroidism. And managing these symptoms can be a full-time job on its own. Add to that the need for numerous pills and supplements, and your day-to-day life can quickly become overwhelming.

What if there was an alternative dosing regimen to maintain your blood calcium levels? That’s the goal of the PARALLAX Study – to improve drug dosing, create better calcium control, and potentially reduce daily doses and the frequency of use of calcium and vitamin D supplements.

To learn more, visit PARALLAXStudy.com.

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Columbia Study

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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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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 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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