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Programs and Research
Studies and Advocacy Initiatives

Ricarda Tomlin, BS, CCRP
Manager, Clinical Research
Transplant Surgery, Yale School of Medicine

If you are interested in participating in a clinical trial, you have several options: (1) talk to your doctor or contact a Wilson Disease specialist near you, (2) network with other patients and the patient association, (3) search the internet.

The first two options are straightforward, but the third should be approached with some caution. As with all internet searches, it is important to make sure information comes from a reliable source. Here are some details about the most reliable and comprehensive places to find a list of clinical trials:

In 1997, the US Congress enacted a law requiring the creation of a public database for all clinical trials. This database, www.ClinicalTrials.gov, is intended to give patients, the general public, health care providers and researchers insight into what research is being done and access to results. A similar database exists in Europe (EU-CTR, www.clinicaltrialsregister.eu) and the World Health Organization launched a search portal (www.who.int/ictrp) that combines information from 17 different registries on one platform.

If you are interested in learning more, you can go to any of these websites and type “Wilson Disease” into the search box to generate a comprehensive list of clinical trials. There are filters to limit your search for trials open to recruitment (i.e., trials that currently accept new enrollees) or by drug name (if you are looking for a specific trial).

Once you are in the record for a specific study, you will find an outline of the study, planned outcome measures, information on who is eligible to participate, and a list of locations currently participating in the study with contact information. Participation in research is always voluntary and you should take your time to find out enough information and get your questions answered before you sign up for a study.

Clinical research works best when it is done in a transparent manner, when all interested patients have access to research participation, and when all outcomes, not just positive findings, are made public making these non-commercial public databases a valuable tool to patients and researchers alike.

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