Transforming drug development in a rare tumor with patient-mediated real-world data

Uncovering meaningful insights in rare disease areas can be like searching for a needle in a haystack. Identifying and recruiting patients with rare diseases into clinical studies is challenging, making it difficult to understand the etiology, disease course, differences among subpopulations and the impact of novel treatments. The oncology community is disrupting the status quo to solve these challenges by directly engaging the patient community to incorporate real-world data into their research. 


In this webinar, speakers from the Cholangiocarcinoma Foundation, AstraZeneca, and Invitae will discuss how they  are working together to characterize the lived experience of patients with rare bile duct cancer, and ultimately, improve patient care. 


Attendees will learn: 

  • The impact of patient centricity in developing treatments and improving patient outcomes 
  • The partnership story of the Cholangiocarcinoma Foundation and Invitae set out to a data-rich registry of patient-owned, medical records  
  • The benefits for patients when these data are put into action by AstraZeneca to guide their research and therapeutic development strategy  

Featured Speakers

Stacie Lindsey
Cholangiocarcinoma Foundation 

Stacie Lindsey is the Founder and Chief Executive Officer of the Cholangiocarcinoma Foundation (CCF). Established in 2006, CCF’s mission is to find a cure and improve the quality of life for those affected by cholangiocarcinoma (bile duct cancer) through advocacy education, collaboration, and research.


In this role, she has engaged with members of the scientific, medical, and academic communities; policymakers and regulators, industry, advocates, patients, and caregivers to advance scientific research to benefit patients with cholangiocarcinoma.

Melinda Bachini
Director of Advocacy
Cholangiocarcinoma Foundation 

Farid Vij
General Manager, Data

Farid Vij is General Manager for Invitae's Data division where he leads strategy, product and operations for the business. His core focus is building a two-sided platform that connects patients, providers and researchers through patient-consented data to help patients find better care options and advance research through real world evidence generation. Prior to Invitae, Farid was co-founder and COO at Ciitizen, a company focused on providing patients with access to their complete medical records. At Ciitizen, he drove the company's operations and go-to-market strategy, before leading its acquisition by Invitae in September 2021.  

Stephen Valerio
Medical Lead, Senior Director, Immuno Oncology

Stephen Valerio is the Medical Lead, Senior Director, at AstraZeneca. Stephen is responsible for leading the US multi-disciplinary Medical Affairs team supporting immune-oncology programs in unresectable HCC and BTCs. With over 10 years’ experience in oncology medical affairs spanning a variety of tumor types

Prior to this role, Stephen led the formation of the Oncology Medical Training Team at AstraZeneca, developing a new model for global Medical Affairs education and training. Prior to that, he was the first Global Oncology Publications Director at AstraZeneca where his team supported several key simultaneous publications of key studies and dramatic improvements in team productivity. He has presented at numerous congresses including the Alliance for Continuing Medical Education Annual Conference, the International Society of Medical Publication Professionals and the Drug Information Association.

Amanda Nottke
Senior Clinical Data Scientist

Amanda Nottke, PhD, has a research background in epigenetics, followed by over a decade of experience working with pharma and biotech companies, non-profits, and directly with patients to accelerate scientific and clinical research into better access for cancer patients to their best treatment options. At Invitae, she focuses on data quality and insights generation for the Ciitizen clinicogenomic datasets.

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