The Drug Information Association will host a special CISCRP (Center for Information and Study on Clinical Research Participation) event on Monday, June 14 from 6:15 – 7:15 pm during the 46th DIA Annual Meeting.
Voices of Medical Heroes: A Family’s Journey of Hope will feature John Crowley, the quintessential spokesman for families seeking life-saving therapies. Mr. Crowley, whose children suffer from Pompe Disease, a rare and nearly always fatal neuromuscular disorder, will retell the story of how he and his family navigated the challenging clinical trial process and shed a new light on the real medical heroes. John’s story is chronicled in the new movie Extraordinary Measures.
“The ‘voice of the patient’ is an important one for DIA, complementing our ‘traditional’ constituencies of industry, regulators, and academia,” says Paul Pomerantz, DIA Worldwide Executive Director. “The patient perspective is gaining increasing credibility in this age of health reform, when nations around the world are seeking to balance access, quality, and cost.”
DIA provides a venue for the patient voice to interact with a global network of professionals in pharma, academia, regulatory agencies, CROs and more. Since 2007, DIA has partnered with CISCRP to connect the patient voice directly with DIA’s more than 18,000 members.
“Along with educating the public and patients, CISCRP also dedicates itself to informing research professionals about the experiences of clinical trial volunteers,” notes Ken Getz, CISCRP’s founder and Board Chair. “We're delighted to be partnering with DIA on this very important event and encourage the research community to show their support by attending the program.”
DIA’s Patient Fellowship Programme, which debuted in Europe five years ago, also serves to strengthen the link between patient representatives, industry, public health authorities and academia.
“Our patient fellowship program and ongoing collaboration with CISCRP have connected patients with global stakeholders from academia, regulatory agencies, and the biopharmaceutical industry,” explains Pomerantz.
ABOUT DIA: DIA is the global connector in the life sciences product development process. Our association of more than 18,000 members builds productive relationships by bringing together regulators, innovators and influencers to exchange knowledge and collaborate in an impartial setting. DIA’s network creates unparalleled opportunities for the exchange of knowledge and has the interdisciplinary experience to prepare for future developments. The dedicated efforts of DIA staff, members and speakers enable DIA to provide a comprehensive catalogue of conferences, workshops, training courses, scientific publications and educational materials. DIA is a global community representing thousands of stakeholders working together to bring safe and effective products to patients. DIA is an independent, nonprofit organization with its global center in Washington, D.C., USA; regional offices covering North and South America (Horsham, Penn., USA); Europe, North Africa and the Middle East (Basel, Switzerland); and Japan (Tokyo), India (Mumbai) and China (Beijing). For more information, visit www.diahome.org.
ABOUT THE CENTER FOR INFORMATION AND STUDY ON CLINICAL RESEARCH PARTICIPATION (CISCRP): CISCRP is a first-of-its-kind nonprofit organization dedicated to educating and informing the public, patients, medical/research communities, the media, and policy makers about clinical research participation and the role that each party plays as a participant in the process. CISCRP’s staff and board of advisors have highly diverse backgrounds - from the clinical research, healthcare and advocacy communities. CISCRP’s funding comes from a wide variety of sources including individual donors, government and research institutions, foundations and corporations.