Symposium IX - Rare Tumor Registries

PDS Symposium IX on rare cancer registries was a virtual meeting held on Oct. 7, 2020.

For the first time in our annual symposia series, we are met online. As a result, more of you were able to engage which will help advance this research area that is ripe for fresh attention and poised for new initiatives and progress.

Rare cancer registries hold potential to solve some of the most difficult challenges to advancing treatment of these rare cancers, which account for more than 20% of the cancers reported worldwide.

The symposium brought together multiple stakeholders representing all sides of this challenge: Practice in the clinic, Pharmaceutical research, Policy and regulatory science, and Patient advocacy to brainstorm the operational dynamics between the groups. 

We were honored and excited to welcome keynote speaker Dr. David Fajgenbaum, the groundbreaking physician-scientist, disease hunter, speaker, and author of the national bestselling memoir, Chasing My Cure: A Doctor's Race to Turn Hope Into Action.  He has also developed and led an innovative approach to research through the Castleman Disease Collaborative Network (CDCN).

We expect registries can assist in four key areas:

  • Refine clinical decision making and more effectively manage patient therapy.
  • Assist pharma in designing comparator arms efficiently, thus accelerating the drug development process.
  • Inform regulators who must decide whether to approve new medicines and how to use them in rare cancers.
  • Provide relief for the suffering patients with better treatment strategies. 


At A Glance

Date: Wednesday, October 8, 2020

Time: 12:00 - 3:00 p.m. (EDT)




Video List

Executive Summary