The Reimagined Registry: Revolutionizing Patient Care and Research through Real-World Data

Life Sciences, Clinical Trials, Healthcare, Commercialization & HEOR, Digital Health,
  • Monday, September 25, 2023

Series Description

The value of real-world data (RWD) is clear. The acceptance of real-world evidence (RWE) is growing. But is this enough to propel RWE from being a nice-to-have to a must-have? PicnicHealth is hosting a four-part webinar series to reframe the return on investment (ROI) for RWE generation and tackle the question: beyond the return on investment for RWE, what is the risk of inaction?

Webinar Abstract

Patient registry systems have long since served as a valuable source of real-world data and a means to study disease-specific characteristics and outcomes longitudinally. Yet, there is increasing recognition of the limitations of traditional registries — from challenges with data availability and representativeness, to risk of referral bias and burden on patients and sites.

This webinar will explore innovative ways that researchers today are reimagining the registry to overcome these obstacles and generate robust research insights from integrated data. Experts representing patient advocacy groups, the biopharma industry and health technology companies will discuss the significance of patient-centric practices and cross-sector collaboration.

The speakers will be providing their unique perspectives on this new world of registries and share relevant case studies demonstrating how RWD is transforming patient care and research.

Join this webinar to gain insights into the innovative ways to overcome challenges and obstacles related to traditional patient registries and how to generate robust research insights from integrated data.


Heather Fitzpatrick, CureDuchenne Link

Heather Fitzpatrick Medlin, Senior Director, CureDuchenne Link

Heather Fitzpatrick Medlin, MSW, is CureDuchenne’s Senior Director of Clinical Development. In this role, Heather leads the CD Link program, a decentralized data integrated biobank platform to connect researchers to coded data and biosamples from individuals with Duchenne and Becker muscular dystrophy (DMD/BMD), as well as carriers of these mutations. Heather has over 25 years’ experience in the clinical research industry across all study phases and therapeutic areas with a concentration in the late phase, medical device and diagnostics projects focused on rare disease. Her prior experience working in the public health arena and hospital settings has enabled her to understand the perspective of patients, health care professionals and industry professionals. She completed her master’s degree at the University of South Carolina and her undergraduate degree at Davidson College.

Message Presenter
Clara Lam, AstraZeneca

Clara Lam, MPH, Asset Lead - Breast, Oncology Outcomes Research, Evidence Generation, Publications & Partnerships, Global Medical Affairs, AstraZeneca

Clara Lam received her MPH from The George Washington University Milken Institute School of Public Health. She continued her studies at the university and pursued her pre-doctoral and post-doctoral fellowships in collaboration with the National Cancer Institute in the Radiation Epidemiology Branch. Clara went on to be a mathematical statistician in the Surveillance Research Program in the Division of Cancer Control and Population Sciences. During the last 3 years, Clara has taken an opportunity to join AstraZeneca in their US Health Economics and Outcomes Research group, then became a strategy director, then finally as an Asset Lead directing a comprehensive portfolio of epidemiologic and HEOR studies supporting AZ breast assets in the US and globally.

Message Presenter
Kristen Morris, Picnic Health

Dr. Dan Drozd, Chief Medical Officer, PicnicHealth

Daniel R. Drozd, MD MSc is the Chief Medical Officer at PicnicHealth. Prior to joining PicnicHealth he was on faculty at the University of Washington in the Department of Allergy & Infectious Diseases where he led research into the use of electronic health record data to power observational research and enhance the understanding of the chronic burden of HIV infection. At PicnicHealth he oversees scientific collaborations with PicnicHealth’s industry and academic partners and works extensively with both the product and commercial teams. Prior to attending medical school he worked for numerous technology start-ups as an engineer and at the University of Washington in the Clinical Informatics Research Group where he led the development of a large EHR data integration platform used to power HIV real world research.

Dr. Drozd attended medical school, Infectious Disease fellowship and completed a Masters in Epidemiology with a focus on Clinical Research at the University of Washington School of Medicine and completed his residency in Internal Medicine at the University of California, San Francisco. He is an expert in clinical informatics and digital health and has over 50 publications and presentations at conferences focusing on novel uses of real world data across a variety of conditions.

Message Presenter
Evelyn Pyper, PicnicHealth

(Moderator) Evelyn Pyper, Evidence Strategist, PicnicHealth

Evelyn Pyper is a Senior Evidence Strategy Manager at PicnicHealth, a patient-centric real-world data company. Her career in real-world evidence (RWE) spans the public and private sectors as well as regional and global markets. Prior to PicnicHealth, she worked as Associate Director of Market Access at J&J Global Public Health, focused on securing access to HIV treatments in Sub-Saharan Africa; and as RWE Manager of a diverse portfolio of partnerships and research projects at Janssen Canada. Evelyn has a BHSc in Health Sciences with a minor in Psychology from McMaster University and a Master of Public Health (MPH) degree from Queen’s University. Evelyn is currently completing her doctorate (DPhil) in evidence-based healthcare at the University of Oxford, with a focus on digital health.

Message Presenter

Who Should Attend?

This webinar will appeal to senior professionals who are in:

  • Health economics and outcomes research (HEOR)
  • Real-world evidence (RWE), real-world data
  • Market access, commercial
  • Medical affairs
  • Research and development
  • Clinical development, clinical operations, trial innovation
  • Epidemiology
  • Digital health
  • Data analytics, data science
  • Pharmacovigilance/ drug safety
  • Regulatory science

What You Will Learn

Attendees will gain insights into:

  • The critical role of patient registries in capturing real-world data
  • Where traditional registries have been successful and what are the major challenges/limitations associated
  • The cutting-edge registry designs and examples of these approaches in action
  • The ramifications of diverse registry approaches on clinical research and patients

Xtalks Partner


PicnicHealth is a healthcare technology company that partners directly with patients to build deep real-world datasets. The company leverages state-of-the-art machine learning, combined with human curation, to port complete medical records into an easy-to-use online application. The platform gives patients unprecedented access to and control over their medical records and, with their consent, the opportunity to contribute this valuable data to further scientific research. Learn more at

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