Practical Ways to Build Trust in Patient Advocacy Groups, upcoming webinar from Xtalks


Cooperation between drug development companies and PAGs can be mutually beneficial in a number of key areas

Patient Advocacy Groups (PAGs) are key allies in developing rare disease registries to fully describe these diseases and develop new treatments. Cooperation between drug development companies and PAGs can be mutually beneficial in a number of key areas, including:

  • Patient Engagement – PAGs are important representatives of patient concerns. Patients may experience research fatigue due to the high exposure of their disease. The PAGs address these concerns and offer mitigating solutions to include patients in long-term rare disease registries.
  • Data Accessibility – PAGs focus on data ownership and seek solutions to make 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 problems. 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 ICON’s expert speakers, 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 11:00 a.m. EDT (4:00 p.m. BST / UK) for guidance on developing Obtain rare disease registries that meet the needs of PAGs, patients, and pharmaceuticals.

The presentation provides insights into building a relevant and sustainable research tool and offers practical strategies for patient engagement, collaboration, multi-sponsor support, data sharing and ownership, including case study examples.

For more information or to register for this event, visit Rare Disease Registers: Practical Ways to Build Trust with Patient Advocacy Groups.


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