Survey on Epidemiology of Hypoparathyroidism in France
This study is gathering information about a condition called hypoparathyroidism in France. This is where your body doesn't make enough parathyroid hormone, which helps control calcium levels. Doctors want to understand how widespread the condition is, what treatments people are using, and if they're experiencing any health problems like kidney stones or issues with calcium levels. There isn't much information like this available, especially for France. By collecting this data, researchers hope to get a clearer picture of hypoparathyroidism, which could help improve how it's understood and managed in the future. You won't be given any new treatments as part of this study.
At a glance
What is this study about?
This study is all about a health condition called hypoparathyroidism. This is a rare condition where the glands in your neck (called parathyroid glands) don't produce enough of a hormone that controls the amount of calcium in your blood. When calcium levels are too low, it can lead to various health issues.
At the moment, we don't have a lot of information about how common hypoparathyroidism is around the world, and there's no specific information for France. This means doctors don't have a full picture of how many people live with it, what treatments they are using, or what other health problems might arise because of it. Sometimes, low calcium can lead to problems like muscle cramps, tingling, or more serious issues like kidney stones or difficulties with how your brain and other organs work over time.
By taking part in this study, you would be helping doctors collect important information. They want to understand how many people in France have long-term hypoparathyroidism, what medications they are taking, and if they are experiencing any complications. This information is really valuable because it helps researchers and healthcare providers better understand the condition and ultimately improve the care and support available for people living with hypoparathyroidism in France.
Key takeaways
- The study helps understand a rare condition: hypoparathyroidism.
- It's for people with long-term hypoparathyroidism in France.
- No new treatments or doctor visits are involved for participants.
- Information is gathered from existing medical records.
- Participation helps improve future care for others.
- Your privacy is protected, and you can withdraw at any time.
Who may be eligible?
To be part of this study, you need to meet a few simple requirements. First, a doctor must have told you that you have chronic, or long-term, hypoparathyroidism. This means it's an ongoing condition, not just a short-term problem.
You also need to be living in France. This study is specifically looking at people within France to understand the condition there.
However, some people won't be able to join. For example, if you have a different type of hypoparathyroidism called "pseudo-hypoparathyroidism," or if your hypoparathyroidism is just a temporary or acute issue, this study isn't for you. Also, if you simply prefer not to share your health information for research, that's perfectly fine, and you wouldn't be included.
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.
- Have I been diagnosed with chronic (long-term) hypoparathyroidism?
- Do I currently live in France?
- Is my hypoparathyroidism not the 'pseudo' type?
- Is my hypoparathyroidism not a temporary or acute condition?
- Am I comfortable with my anonymised health data being used for research?
What does participation involve?
If you take part in this study, you wouldn't be asked to change any of your current treatments or visit any new clinics. This study doesn't involve giving you any new medication or specific medical procedures. Instead, it's about collecting information that doctors already have about your health. This means the researchers will look at your medical records to gather details about your hypoparathyroidism diagnosis, the medicines you take for it, and any related health problems you've experienced. There are no extra tests, doctor visits, or follow-up appointments required from you. The study involves looking back at existing data, so there's no set total duration for your direct involvement beyond agreeing for your anonymised information to be used.
Potential risks and benefits
Locations (57)
- Felix Guyon HospitalVerified postcodeSaint-Denis, France· Recruiting
- Hôpital Privé de ProvenceVerified postcodeAix-en-Provence, France· Recruiting
- Amiens University HospitalVerified postcodeAmiens, France· Recruiting
- Clinic Auch AreaVerified postcodeAuch, France· Recruiting
- Henri Mondor HospitalVerified postcodeAurillac, France· Recruiting
- Jean Minjoz HospitalVerified postcodeBesançon, France· Recruiting
- BlanquefortVerified postcodeBlanquefort, France· Recruiting
- Avicenne Hospital, AP-HPVerified postcodeBobigny, France· Recruiting
- Jean Verdier Hospital, AP-HPVerified postcodeBondy, France· Recruiting
- University HospitalVerified postcodeBordeaux, France· Recruiting
- Bourgoin Jallieu HospitalVerified postcodeBourgoin, France· Recruiting
- La Cavale Blanche HospitalVerified postcodeBrest, France· Recruiting
Common questions
What is hypoparathyroidism?
It's a condition where your body doesn't produce enough parathyroid hormone, which helps control the amount of calcium in your blood.
Will I be given new medicine or treatments?
No, this study doesn't involve any new medicines or treatments. Researchers will just collect information about your existing care.
Is my personal information kept private?
Yes, your personal details will be kept confidential and anonymised to protect your privacy.
Do I have to live in France to join?
Yes, this study is specifically looking at people with hypoparathyroidism who live in France.
What's the main aim of this study?
The main aim is to understand how common hypoparathyroidism is in France, what treatments people use, and any related health problems.
How to find out more
Jean-Philippe Bertocchio, MD, PhD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
Community discussion
Powered by our forum at community.patient.info. Please be respectful — this is not medical advice.