The Annual RARE Patient Advocacy Summit, hosted by Global Genes, is in its seventh year and will take place on October 3-4 at the Hotel Irvine in Irvine, California. It is the largest gathering of rare disease patients, advocates and thought leaders worldwide. Global Genes is one of the leading rare disease patient advocacy organizations in the world. There mission is to eliminate the challenges of Rare Diseases.
For the first time, HNF will be part of the agenda and has been asked to speak on two sessions: Architecting Your Disease Community, as well as Data and Technological Innovation. Allison Moore, HNF CEO and Joy Aldrich, HNF Advocacy Director will present “Update from the Community: Patient-Focused Drug Development Meetings” alongside Dr. Jill Jarecki, Chief Scientific Officer, Cure SMA. They will lead a discussion on the process, challenges and benefits of engaging in the effort to help understanding of the patients’ disease experience and that their treatment priorities are included in drug development and review.
Allison Moore will present the new proprietary GRIN platform and technological innovations that are revolutionizing the type of data that can be collected when capturing specific patient reported outcomes. By utilizing Voice Activation Technology (VAT), HNF can better capture in the patient’s voice PROs on pain and behavioral health. This type of data may enhance a better understanding of what patients are going through and a tool once validated to be incorporated into clinical trials.
Kent Thoelke, Executive Vice President and Chief Scientific Officer from PRA Health Sciences, a leading CRO company will present on the challenges in conducting research in the rare disease populations. He will emphasis the importance of the patient perspective on clinical research and leveraging data to guide clinical trial design and the utilization of technology to create patient-focused virtual clinical trials. These innovations provide a way not just to collect better data, but also to collect data that is truly patient-centric and may improve the future of drug development and clinical trials. #2018GGSummit