Volunteer for Wilson disease research studies
Sponsored by Ultragenyx
Wilson disease is a rare genetic disorder that can cause copper to accumulate in your liver, brain, and other vital organs. Wilson disease research can’t move forward without volunteers. Learn more about opportunities to participate in clinical research studies.
This website is for clinical trial and research recruitment for US residents.
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About clinical trials
Who is Antidote?
Antidote is a digital health company on a mission to transform the way that sponsors and volunteers connect in order to accelerate medical research. They are headquartered in the US and the UK.
What is clinical research?
Clinical researchers determine if new interventions, including potential treatments, healthcare technology, healthcare services, and medical devices, are safe and effective for humans. All medications and devices must undergo clinical trials before they are made available to the public. Before anyone can participate in a clinical research trial, they will be asked to review and sign an informed consent form (ICF), which will explain the potential benefits, risks, and side effects that may be experienced while taking part in the clinical trial. Signing it indicates that participants agree to take part in this research study.
What's the difference between an observational study and an interventional study?
There are two different kinds of studies in which you can participate. Most common are interventional clinical trials in which volunteers participate to determine whether investigational drugs or treatments are safe and effective for humans. All investigational medications and devices must undergo clinical trials before they are made available to the public.
There are also observational studies, in which researchers ask volunteers with the same disease or treatment plan to be observed over a period of time. During this time, researchers observe how participants are responding to their treatments and take into account different variables that they might be exposed to.
In some cases, researchers will analyze de-identified medical records to see how a disease affects participants in varying geographic locations or with different treatment plans. A registry is often a type of observational study used to gain a deeper understanding of a condition.
What motivates a volunteer to participate in a clinical trial?
Participants receive access to potential new treatments, medical devices, and healthcare services and technologies. By participating, they may help everyone living with their condition. They may also often get access to better care.
What are the benefits and risks of participating in research?
Each clinical trial or research study comes with its own potential benefits and risks. It's important to discuss these benefits and risks with your doctor before making any decisions.
Is a participant's information kept safe?
All participants' information will be kept confidential within the limits of the law of the country in which the trial is conducted. If the results of this clinical trial are published or presented in a meeting, participants will not be identified.
Can participants decide to leave a trial?
Participants can decide to leave a clinical trial or research study at any time, for any reason. There is no charge or penalty for deciding not to take part in a clinical trial.