Patient advocacy groups (PAGs) are key allies in the development of disease registries to fully describe rare disease and develop new treatments.

With the right planning and understanding, collaboration between drug development companies and patient advocacy groups (PAGs) can be mutually beneficial in a number of key areas. 

  • Patient engagement – PAG are key representatives of patient concerns. Patients are very interested in learning about their disease and helping new therapies to become available. They experience research fatigue because of the high burden of their illness. The PAG’s surface these concerns and provide mitigating solutions to keep patients involved in long-term disease registries.
  • Data accessibility - PAGs focus on data ownership and ensuring data reaches the widest possible audience. They are looking for solutions for making the registry studies they sponsor or participate in more accessible to all stakeholders; including patients, providers and industry partners.
  • Research sustainability - PAG's maintain societal concern about their disease despite other competing health concerns. At the same time, diagnosis and treatments for rare diseases change over time so patient registries need to evolve to stay current. There is a natural partnership between PAGs and pharmaceutical sponsors to ensure that the most relevant information is collected in a rare disease registry.

Register today for guidance on developing patient registries that satisfy the needs of PAGs, patients and pharma. Join us to learn about:

  • Practical ways to build PAG and pharma trust and collaboration
  • PAG concerns regarding data sharing and ownership
  • Building a relevant and sustainable research tool
  • Practical strategies for patient engagement, collaboration, multi-sponsor support, data sharing and ownership, including case study examples

Dr. William C. Maier, MPH, PhD – Epidemiology

Vice President, Rare Disease, Drug Development Sciences, ICON

Dr. Maier has over 25 years of experience in drug development and commercialisation at pharmaceutical companies in Europe, Canada, the United States and Asia. In his current role, he works with product development companies throughout the world to provide regulatory, strategic and scientific guidance on product development and commercialisation. He has experience in rare disease, respiratory, neurology, psychiatry, autoimmune, oncology, endocrinology, dermatology cardiovascular, cerebrovascular, urology, opioid dependency, vaccine and anti-infective therapy areas.


- Pharmaceutical and biotechnology professionals working in rare disease development, including:

  • Medical directors
  • Therapy area directors
  • Clinical trial directors and managers
  • Research managers

- Patient advocacy groups looking to set up registries and clinical trials