Wilson Disease Association Practices with Respect to Pharmaceutical Companies
The WDA, Wilson Disease Association, has always encouraged the development of new drugs and treatments to benefit our members and patients everywhere. We can do this in many ways. We can endorse and promote pharma company patient surveys, help find patients for clinical trials and give feedback to pharmaceutical companies. We are willing to help pharmaceutical companies with the language they use in their survey instruments and other communications. It is our experience that when pharma companies communicate they sometimes make the mistake of elevating their language or missing the questions the patients want to be asked and the result is a poor survey.
The WDA knows that pharmaceutical companies eventually want more access to patients for research and that these companies must realize that patients will ask us by phone, email and social media which surveys and clinical trials are legitimate. We cannot say that they are, if those companies do surveys or communications that we haven’t seen or know who is doing them. In those cases we make public that we do not endorse the survey and recommend to patients that they do not participate. We found this position to be necessary because there have been at times, some devious and fraudulent methods used by persons who are not who they claim to be, to gain the personal information of patients. We can only assume that if approaching our patients without identifying themselves that our patients are at risk for something.
The WDA promotes new Research and welcomes new entities into the realm of developing new treatments. We want to work with you and believe this kind of relationship can be mutually beneficial. The WDA will be courteous and honor its commitments to Pharmaceutical companies and expects the same in return. We also want to protect the privacy of our patients as much as possible.
Please make sure that your marketing department has a clear understanding of HIPPA laws.
Confidentiality agreements can be signed to protect your intellectual properties when needed.
Below is a paper published in 2018 regarding a patient survey. The questions and results are information many pharmaceutical companies ask for or need. We put it here to expedite pharmaceutical research and eliminate duplicated questionnaires.
Registry Updates and Other Notifications
Paper being presented at AASLD conference, November 8-12, 2019 Boston
This research is blacked out until after the conference.
Major depressive disorder in patients with Wilson Disease.
Paula Zimbrean, Susan Rubman Gold, Keerthana Nalamada, Michelle Camarata, Ricarda Tomlin, Amar Patel, Ana Vives-Rodrigues, Udeme Ekong, Nigel Bamford, Pamela Valentino, Uyen To, Yanhong Deng, Xuemei Song, Aftab Ala, Michael Schilsky. Major depressive disorder in patients with Wilson Disease. Journal of Psychosomatic Research. Volume 121, June 2019, Page 148. (Abstract)