International Wilson's Disease Patient Registry (iWilson Registry)
The iWilson Registry is gathering information about Wilson’s disease from patients during their routine check-ups at clinics. This isn't a study testing new treatments, but rather an ongoing collection of data to learn more about the condition. Researchers will look at how the disease progresses, how different treatments are used, and how it impacts people's daily lives. By collecting this information over a long period from many different people, the registry hopes to understand the disease better and help improve future care and treatment guidelines. It includes data from diagnosis and continues as patients receive their usual care, helping to identify how to best manage Wilson's disease.
At a glance
What is this study about?
Imagine a big, ongoing notebook where doctors and researchers write down important information about people with Wilson’s disease during their regular clinic visits. That’s essentially what the International Wilson's Disease Patient Registry (iWilson Registry) is. It's not a study where you try a new medicine or treatment; instead, it simply collects facts about your condition as part of your normal medical care. This helps everyone understand how Wilson’s disease affects people over time, how different treatments are used in real life, and what the everyday experience of living with the condition is like.
The main goal is to gather a lot of information from people across different countries. This includes details from when you were first diagnosed, your medical history, and how you're doing at your regular check-ups. By looking at all this information together, doctors can learn more about how Wilson’s disease starts, how it’s treated in different places, and what works best. It also helps them identify common patterns and areas where more research might be needed.
This registry is important because it looks at a wide range of people – children, adults, and older individuals – and focuses on how the disease is managed in the real world, not just in strict research settings. This broad view helps researchers detect things that might happen in the long term, both good and bad, which might be missed in shorter, more focused studies. Ultimately, the information gathered will help improve our understanding of Wilson’s disease and lead to better care for everyone.
Key takeaways
- It collects information about Wilson's disease during your normal check-ups.
- This is not a study testing new treatments.
- Your routine care for Wilson's disease will not change.
- Information gathered helps understand Wilson's disease better to improve future care.
- Your personal health information will be kept private and secure.
- You can stop being part of the registry at any time.
Who may be eligible?
To be part of this registry, you need to have been diagnosed with Wilson's disease. This includes people who don't have symptoms yet, as well as those with other health conditions alongside Wilson's disease. Whether you are currently taking medication for Wilson's disease (including traditional therapies) or not, you could still be eligible.
Most importantly, you must be able to understand and sign a consent form, giving permission for your information to be used in the registry. This form explains everything in detail and ensures your privacy is protected according to UK laws and regulations.
Simply put, if you have Wilson's disease and are willing to share your health information from your regular clinic visits, you might be able to join. The main reason you wouldn't be able to join is if you, or your legal guardian if you're a child, decide against signing the consent form.
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.
- Do you have a diagnosis of Wilson's disease?
- Are you able to understand and sign a consent form, or have a legal guardian who can?
- Do you attend regular clinic visits for your Wilson's disease?
- Are you willing to have details from your usual medical records shared (anonymously) for research?
- Are you of any age, from 12 years old onwards?
What does participation involve?
If you decide to join the iWilson Registry, your involvement will mostly happen during your usual, scheduled clinic visits for Wilson's disease. You won't need extra appointments or special tests just for the registry. At the very beginning, when you first join, the research team will collect information about your diagnosis, your past medical history, and any treatments you've had. Then, at your regular clinic appointments, which usually happen every 6 to 12 months, the team will simply gather data that your doctor would normally collect anyway.
This data includes your medical history, details about your Wilson's disease diagnosis and treatment, genetic information, results from liver and neurological tests, and how you feel emotionally. You might also be asked to complete a short health survey once, if you are over 18, to understand your general quality of life. The registry follows you for as long as you continue your regular care at the clinic and wish to participate. You won't be given any new medications or treatments as part of the registry; you’ll continue with your standard care as decided by your doctor.
Potential risks and benefits
Locations (16)
- University Hospital LeuvenVerified postcodeLeuven, Belgium· Recruiting
- Hospices Civils de LyonVerified postcodeBron, France· Recruiting
- HF Adolphe de RothschildVerified postcodeParis, France· Recruiting
- Charite-Univeritatsmedizin Berlin HospitalVerified postcodeBerlin, Germany· Recruiting
- Universitatsklinikum DusseldorfVerified postcodeDüsseldorf, Germany· Recruiting
- Hannover Medical School (MHH)Verified postcodeHanover, Germany· Recruiting
- Universitätsklinikum LeipzigVerified postcodeLeipzig, Germany· Recruiting
- Institute of Psychiatry and NeurologyVerified postcodeWarsaw, Poland· Recruiting
- The Children's Memorial Health InstituteVerified postcodeWarsaw, Poland· Recruiting
- King Faisal Specialist Hospital in RiyadhUnverifiedRiyāḑ, Saudi Arabia· Recruiting
- Hospital Universitario GC Dr NegrínVerified postcodeLas Palmas de Gran Canaria, Spain· Recruiting
- University Hospital Clínic de Barcelona, C. de VillarroelVerified postcodeBarcelona, Spain· Recruiting
Common questions
What is a patient registry?
A patient registry is like a large, ongoing database that collects health information from many people with a specific condition, like Wilson's disease. It helps doctors and researchers learn more about the condition over time.
Will I receive new medicine or treatment?
No, this registry doesn't involve giving you new medicines or treatments. You will continue to receive your usual medical care for Wilson's disease from your own doctor.
How will my information be protected?
Your privacy is very important. All information collected will be handled confidentially and securely, following strict data protection laws in the UK to keep your personal details safe.
How long will I be part of the registry?
You will be part of the registry for as long as you continue to have your regular clinic visits for Wilson's disease and wish to participate. You can choose to leave at any time.
What is the main purpose of this registry?
The main purpose is to help doctors and researchers understand Wilson's disease better – how it develops, how it's treated, and how it affects people's lives – so that future care can be improved.
How to find out more
Carla Bennett
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
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