RecruitingOBSERVATIONAL

Registry for Hypoparathyroidism Wuerzburg

This study, called the 'Registry for Hypoparathyroidism Wuerzburg,' is exploring how living with hypoparathyroidism and its long-term treatments affects people's health. Even with standard care, people with this condition can experience problems like calcium levels that are too low or too high, and their general health and quality of life might be affected. Researchers want to understand these issues better, including how often people have low calcium events and how they cope with daily life. Participants will be asked about their health in an interview, and they'll have some medical tests, including blood tests, and scans of their heart and kidneys. This will help doctors learn how to provide even better care for people with hypoparathyroidism.

At a glance

Status

Recruiting

Sponsor

University of Wuerzburg

Enrolment target

300

Start

18 Oct 2017

Estimated completion

01 Jan 2032

Comorbidities and Coexisting Conditions Morality Hypocalcemia Hypercalcemia Quality of Life

What is this study about?

This study, called the 'Registry for Hypoparathyroidism Wuerzburg,' aims to understand how hypoparathyroidism affects people's lives over the long term. Hypoparathyroidism is a condition where the body doesn't produce enough parathyroid hormone, which is important for keeping calcium levels balanced. While current treatments help, they don't always fully fix the calcium imbalance. This can lead to various health problems, including emergency situations, and can also impact how people feel day-to-day.

The researchers want to get a clearer picture of these challenges. They'll be looking at general health issues, how often people experience calcium levels that are too low (hypocalcemia) or too high (hypercalcemia), and how people feel about their health and manage their daily activities. This information is really important because it can help doctors improve how they treat and support people with hypoparathyroidism in the future.

To gather this information, participants will be asked to do a few things. This includes having a detailed chat (interview) about their health and daily life, providing blood samples for testing, and having some common medical scans, such as an ultrasound of their kidneys and an echocardiogram, which is a scan of the heart. All of this will help the research team at the University Hospital Wuerzburg in Germany understand the condition better and ultimately help people who live with it.

Key takeaways

This study focuses on long-term health in people with hypoparathyroidism.
It aims to understand issues like calcium imbalances and quality of life.
Participation involves interviews, blood tests, and heart/kidney scans.
The goal is to improve future care for patients with this condition.
It's open to adults (18+) with chronic hypoparathyroidism or pseudohypoparathyroidism.

Who may be eligible?

To take part in this study, you need to be at least 18 years old. You must have been diagnosed with either chronic hypoparathyroidism or chronic pseudohypoparathyroidism for more than a year, and currently be receiving treatment for it. Also, you'll need to give your written consent, meaning you agree in writing to participate after understanding what the study involves.

If you are under 18 years old, you unfortunately can't join this study. Also, if your medical records don't clearly show that you have hypoparathyroidism or pseudohypoparathyroidism, you wouldn't be able to participate either.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Have you had hypoparathyroidism or pseudohypoparathyroidism for over a year?
Are you currently receiving treatment for your condition?
Are you able to provide written agreement to participate?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, the research team will ask you to participate in a few activities. You'll have a detailed interview about your health, how you're feeling, and how your condition affects your daily life. They will also take some blood samples for testing. Additionally, you will have some medical scans, specifically an ultrasound of your kidneys and an echocardiogram (a heart scan). The study is designed to follow your health over time, but the specific number of visits or the total duration isn't mentioned in this summary. The researchers will compare your information with other people who are similar in age and gender but don't have hypoparathyroidism, to better understand the findings.

Potential risks and benefits

By taking part, you could help doctors learn more about hypoparathyroidism and how to improve care for others in the future. While there might not be a direct benefit to your health from participating, the information gathered is very valuable for medical understanding. There are typically minimal risks associated with interviews, blood tests, and routine scans like ultrasounds, though some people might find blood tests uncomfortable. You are free to ask questions at any time and can choose to stop participating in the study for any reason, without it affecting your medical care.

Locations (1)

Dept. of Endocrinology and Diabetology, Dept. of Medicine I, University Hospital Wuerzburg
Verified postcode
Würzburg, Germany· Recruiting

Common questions

What is hypoparathyroidism?

It's a condition where your body doesn't make enough parathyroid hormone, which is important for controlling calcium levels in your blood.

What are they hoping to learn from this study?

Researchers want to understand how hypoparathyroidism and its treatments affect people's health, daily life, and overall well-being over a long period.

What medical tests will I have?

You'll have a detailed interview, blood tests, and scans of your heart (echocardiogram) and kidneys (renal ultrasound).

Where is this study taking place?

The study is being conducted at the University Hospital Wuerzburg in Germany.

Will I get paid for participating?

This information isn't provided in the summary. You should ask the study team directly if financial compensation is offered.

How to find out more

Stefanie Hahner, MD

hahner_s@ukw.de 0931/201-39200 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.