Chicago, June 19-23, 2011
Fifteen patient groups were represented and received scholarships to attend the 47th annual DIA meeting that took place June 19-23 at the McCormick Place West convention center located in Chicago, IL. The robust agenda covered 328 topic areas and was chaired by Ken Getz, Senior Research Fellow, Tufts Center of the Study of Drug Development and Founder of Center for Information and Study on Clinical Research Participation (CISCRP).
Ken Getz, DIA Conference Chair 2011
For the first time ever, the DIA conference included patient feedback generated as part of the new DIA Patient Fellowship Program. To become a DIA Patient Fellow, one must complete an application that is then processed by a review board. The selection is competitive and is based upon responses by the applicant.
Pictured above are the 2011 DIA Patient Advocates with DIA leaders.
Back row (left to right): Richard Day, DIA Immediate Past-President; Yves Julliet, DIA President; Cheryl Jernigan, Susan G. Komen for the Cure; Holli Kawadler, Uniting Against Lung Cancer; Nikia Okoye, American Kidney Fund; Anitra Talley, Pancreatic Cancer Action Network; Cindy Hahn, Alagille Syndrome Alliance; Paul Pomerantz, DIA Worldwide Executive Director
Front row (left to right): Donna Mayer, DIA Patient Fellowship Coordinator; Veronica Todaro, Parkinson's Disease Foundation; Bonnie Arkus, Women's Heart Foundation; Lorren Sandt, Hepatitis C Caring Ambassadors Program; Susan Hagen, National Ataxia Foundation; Liana Burns, Asthma and Allergy Foundation of America.
Not pictured: Richard Gelula, National Alopecia Areata Foundation; Dione Kobayashi, Spinal Muscular Atrophy Foundation; Virginia Ladd, Autoimmune Diseases Association; Molly Stuart, International Pemphigus & Pemphigoid Foundation; Jurgen Venitz, Myasthenia Gravis Foundation.
uMs. Bonnie Arkus, RN, WHF Executive Director represented women with heart disease and spoke as a patient advocate to leaders in research, government, pharmaceutical and regulatory agencies. She joined other patient advocates who attended the 4-day event. Governor Pat Quinn opened the conference with a warm welcome to the more than 8,000 attendees.
Illinois Governor Pat Quinn opened the conference
Pictured above are the 2011 DIA leaders: Pomerantz, Day, Julliet, and Getz with keynote presenter David D. Ho, MD of Aaron Diamond AIDS Research Center.
A plenary session took place the second day of the conference, featuring patient advocates who had taken part in a clinical trial. "Voices of the Patient: Stories That Touch Us", was facilitated by Diane Simmons, President and CEO of CISCRP. The Patient Advocates gave valuable feedback to researchers and pharma. Industry leaders, regulators and pharmaceutical researchers rarely, if ever, come face to face with actual patients who take part in a clinical trial. Some suggestions for cultivating new patient relationships were offered:
- to nurture patient-participants by sharing the end results of the research study;
- to offer to make a drug available to the patient-participant post-trial, should the patient experience be a positive one with alleviation of symptoms or arrest of the disease.
Craig H. Lipset, Head of Clinical Innovation Development Operations Pfizer Inc.has been selected to chair the 48th annual DIA conference, to take place in Philadelphia Convention Center June 24-28, 2012.
Craig Lipset, DIA Conference Chair 2012
The Women's Heart Foundation (WHF), a 501c3 and the only non-governmental organization that implements heart disease prevention projects, is dedicated to prevention of heart disease and improving survival and quality.
Drug Information Association (DIA) is a professional association of more than 18,000 members worldwide who are involved in the discovery, development, and life cycle management of pharmaceuticals, biotechnology, medical devices, and related health care products. For more information, go to www.diahome.org
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