Patient advocacy groups (PAGs) are key allies in the development of rare disease registries to fully describe these illnesses and develop new treatments. Collaboration between drug development companies and PAGs can be mutually beneficial in a number of key areas, including:
- Patient engagement — PAGs are key representatives of patient concerns. Patients can experience research fatigue because of the high burden of their illness. The PAGs surface these concerns and provide mitigating solutions to keep patients involved in long-term rare disease registries.
- Data accessibility — PAGs focus on data ownership and look for solutions for making the rare disease registry studies they sponsor, or participate in, more accessible to all stakeholders, including patients, providers and industry partners.
- Research sustainability — PAGs maintain societal concern about their disease despite other competing health concerns. There is a natural partnership between PAG and pharmaceutical sponsors to ensure that the most relevant and up-to-date information is collected in a rare disease registry.
Join expert speakers from ICON, William C. Maier, MPH, PhD, Epidemiology, Vice President, Rare Disease, Drug Development Sciences; and Juliane Mills, MPH, MS, Senior Director of Therapeutic Expertise, Rare Diseases, in a live webinar on Thursday, October 14, 2021 at 11am EDT (4pm BST/UK) for guidance on developing rare disease registries that satisfy the needs of PAGs, patients and pharma.
The presentation will offer insight into building a relevant and sustainable research tool, and offer practical strategies for patient engagement, collaboration, multi-sponsor support, data sharing and ownership, including case study examples.