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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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Jean P. Perog
Jean P. Perog President
Jean is a retired CPA living in Merritt, British Columbia. She has WD and has a brother with WD. Jean also served as Treasurer of the Wilson Disease Association and is an active volunteer in her community.
Carol Terry
Carol Terry Secretary
Carol was diagnosed in 1973 with WD and is a retired US Government accountant. She helped found the WDA in 1983 and served as its President for ten years. She also served as Vice-President, Treasurer and Secretary.
Mary L. Graper
Mary L. Graper VP Scientific Affairs
Mary has over 25 years experience as a volunteer leader, and is recognized for her creativity, organizational and leadership skills. She holds a B.S. degree in Education from the University of Wisconsin-Milwaukee.
Rachel Albert
Rachel Albert Vice President
Volunteering has been an important part of Rachel's life since childhood. Over the years, she has committed her time and energy to numerous non-profit organizations. She majored in psychology and graduated Magna Cum Laude from Amherst College. She also earned an M.P.H. in Geriatrics and Gerontology from Columbia University.
Jeanne A. Friedman
Jeanne A. Friedman
Jeanne is a Licensed Clinical Social Worker and has WD. She has been with Wilson Disease Association since 2013 and lives in Kew Gardens, New York.
Stephen Walsh
Stephen Walsh Treasurer
Stephen lives in Boulder, Colorado and has a daughter with WD. He went to college at the University of Colorado and graduated with a B.S. in finance.

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