News

The latest on lung cancer and the registry

Registry News

Lung Cancer Registry Launches Landmark Survey on Women’s Sexual Health (June 2020 – Press Release)

(Washington, DC)—The Lung Cancer Registry has launched a landmark new survey on the impact of lung treatments on women’s sexual health. The aim is to explore the magnitude of the problem and give researchers and clinicians new insights to improve the quality of life for women lung cancer survivors.

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This Is Our Registry + NEW Participant Video (June 2020 – Newsletter)

Participate in the Lung Cancer Registry, a community powered by patients and the patient voice. Together, moving lung cancer developments forward.

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New COVID-19 Poll & 7 Tips or Coping with Your Emotions (March 2020)

The Lung Cancer Registry is tracking information on how COVID-19 may be affecting your or your loved one’s cancer care.

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New Surveys + Registry Insights on Stigma (February 2020)

We launched new and improved surveys in November that are designed to better understand your lung cancer journey. The health data we gather from you and other registry participants provide insights to guide researchers and insights for you as well.

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New SURVEYS to Capture Key Data

We have exciting news and we wanted you to be the first to know.

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New Community Poll Feature & Recent Registry Publication

We are excited to announce the Community Polling as a brand new feature to the Lung Cancer Registry! Updated often with new questions, we encourage our participants to log in and provide insight into your treatment journey.

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ASCO 2019 – Caring for every patient, learning from every patient

Last month, some of the greatest minds in cancer research got together at one of the biggest annual cancer conferences, American Society of Clinical Oncology (ASCO). GO₂ Foundation attended, below are some exciting highlights:

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Be Heard in the Fight Against Lung Cancer -- here's how

Ready to make a greater impact on the fight against lung cancer? Explore some of the many ways you can contribute your strengths to the lung cancer community on our Become an Ambassador page! If you are an ambassador already -- thank you! Please visit the new page to find inspiration for how else you can help your community.

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The Registry Has a New Look and New Features – Come See For Yourself!

This month, we are excited to announce an all-new website. Log in and explore the new interface and features, including:

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The Nation's Leading Lung Cancer Organizations Join Forces to Launch "GO2 Foundation for Lung Cancer"

(San Carlos, CA and Washington, DC) – Two of the most effective and influential nonprofit organizations serving the lung cancer community, the Bonnie J. Addario Lung Cancer Foundation (ALCF) and Lung Cancer Alliance (LCA) today proudly announced they are joining forces as the GO2 Foundation for Lung Cancer. Together they become the "go-to" local and global force serving and advocating for the needs of the millions of people who are vulnerable, at risk or diagnosed, and all others impacted by or impacting the disease.

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The Registry Advances Cancer Research with 2 New Abstract Publications

Thank you for your participation in the Bonnie J. Addario Lung Cancer Registry! We are happy to announce two more abstracts have been accepted for presentation. Read below about the scientific meetings where your anonymous patient data will be presented:

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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.

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Your Data Moves Research Forward — The Registry’s Immunotherapy Survey Data is Presented

This month we are excited to announce that a summary of interim data was submitted and accepted as a poster for the Society for Immunotherapy of Cancer 33rd Annual Conference, held on November 7-11th, 2018. If you participated in our Immunotherapy Questionnaire, your anonymous data has directly impacted medical research - thank you! Read more about our study and its findings here.

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New 2nd or 3rd Line Treatment for ALK+

Thank you for your participation in the Bonnie J. Addario Lung Cancer Registry! This month we have exciting news to share with our ALK+ patients:

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New First-line Treatment for EGFR Patients

Thank you for your participation in the Bonnie J. Addario Lung Cancer Registry! This month we have exciting news to share with our EGFR patients:

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Online Support Group Joins Forces with Registry to Advance Research

This month, we are excited to announce our partnership with the ALK Positive Facebook Support Group! By uniting our missions, more data means greater potential for patient-driven research.

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News for Patients with Small Cell Lung Cancer - New FDA Approval

Thank you for your participation in the Bonnie J. Addario Lung Cancer Registry! This month, we are pleased to share exciting updates and opportunities within the Lung Cancer Registry and the greater cancer communities:

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Announcing ROS1-fusion Research Study: Now Enrolling Patients Like You

Thank you for your participation in the Lung Cancer Registry! This message is coming to you because you indicated you have the ROS1 mutation.

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ASCO 2018 - Expanding the Reach of Precision Medicine

Thank you for your participation in the Bonnie J. Addario Lung Cancer Registry! Our records show that you are an SCLC patient and we want to ensure we share the latest advancements in SCLC with you. We are pleased to announce a new drug approval for advanced small cell lung cancer patients!

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New Research Studies Available!

This month we are happy to share some incredible opportunities from our sister organizations! Read more about new research studies currently open to enrollment that would give you or someone you know the unique opportunity to be at the forefront of lung cancer research.

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You Can Advance the Science of Lung Cancer

Thank you for your participation in the Lung Cancer Registry! We are pleased to share:

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Registry Reports

Lung Cancer Registry - Lung Cancer Patient Survey Analysis April 2019 (January 2019 Data)

This April 2019 analysis provides patient insights from the patient-reported data collected through the “Lung Cancer Patient Survey” in the Lung Cancer Registry from November 2016 - January 2019.

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Lung Cancer Registry - Lung Cancer Patient Survey Analysis September 2018 (June 2018 Data)

This September 2018 analysis provides patient insights from the patient reported data collected through the “Lung Cancer Patient Survey” in the Lung Cancer Registry from November 2016 - June of 2018.

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Registry Research & Publications

Lung Cancer Registry Launches New Surveys - Share YOUR story

New Modules to Capture Longitudinal Data on Lung Cancer Patients

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Rates of Support and Care Offerings Among Patients in an Advocacy Organization Sponsored Lung Cancer Patient Registry

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Examination of Genetic Alterations in Young Lung Cancer Patients From the Lung Cancer Registry

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The Power of One Leads to Progress for Many - Interview Sandra Shaw Director of the Lung Cancer Registry

Reprinted with permission from Patient Resource LLC. Copyright 2019 Patient Resource LLC

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The Gift of Cancer Registries

Our Lung Cancer Registry highlights the value of patient-driven research in CURE Magazine - "The Gift of Cancer Registries" by Marilyn Fenichel

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"Lung Cancer Survivors: Your input is needed!" a blog article by lung cancer patient, Donna Fernandez

Donna talks about the Registry and how it unites voices from the community, shares the needs and experiences, and helps learn from others.

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A Real-World Example: ALCF Immunotherapy Survey

The current ALCF immunotherapy survey is an example of how the registry can be used in research with patients in specific subpopulations to help fill in known information gaps. The survey is a research study exploring the side effects patients experience when receiving treatment with immune checkpoint inhibitors, which is a form of immunotherapy.

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Abstract ASCO-SITC 2019 Immunotherapy Symposium

Patient Reported Toxicities: Development and Validation of Patient Reported Symptom Measure for Lung Cancer Patients Receiving Immunotherapy

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Abstract SITC - 2018 33rd Annual Meeting - Patient Reported Toxicities: Development and Validation of Patient Reported Symptom Measure for Lung Cancer Patients Receiving Immunotherapy

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