Happy Holidays and New Year from the Registry

As we come to an end of 2018 we would like to reflect on the advances the Registry has made, and express our gratitude for your invaluable contributions to lung cancer research.

As we come to an end of 2018 we would like to reflect on the advances the Registry has made, and express our gratitude for your invaluable contributions to lung cancer research.

This year in the registry

  • There are currently 1,288 members. 856 participants joined the registry this year, nearly tripling the number of new members joining in a single year and tripling the size of the registry as a whole!
  • 1,196 participants have taken the baseline survey, ages ranging from 11 - 94 years
  • 189 participants have completed the immunotherapy survey, contributing their data to our study and to the published abstract from last months Society for Immunotherapy of Cancer 33rd Annual Conference
  • Participants live in more than 38 countries and 6 continents across the world, expanding our global reach by 21 countries this year
  • Over 30 researchers, advocates and industry members worldwide have joined our researcher network, suggesting we are a valued and trusted source of patient-reported data

Looking towards the future

Next year we will implement a new survey structure! This new modular format will not only provide more insight overtime, but also means that the survey modules will be shorter. These surveys-- to be taken annually or quarterly --- will collect similar data as now, and will allow for researchers to study comparisons over time. Your voice matters! As the size of the registry continues to grow, and our understanding of your cancer journey is defined, your data will carry a greater impact. With your anonymous data, we hope to publish more on patient-reported outcomes, quality of life and survivorship, ultimately contributing to the rapid advances in cancer research.

We'd love to hear form you!

Have ideas on how to improve the registry or the survey experience? Please email us at This email address is being protected from spambots. You need JavaScript enabled to view it.

Sandra Shaw
Director, Patient Registry
Bonnie J. Addario Lung Cancer Foundation
This email address is being protected from spambots. You need JavaScript enabled to view it.
www.lungcancerregistry.org