Surveys
Learn more about the current studies available to members of the Lung Cancer Registry.
Share your lung cancer journey
Patients, survivors, and caregivers can contribute their individual experiences with lung cancer by completing our surveys. Surveys include questions about medical history, diagnosis, treatment, outcomes, and quality of life. Because Lung Cancer Registry surveys are completed quarterly (every 3 months), the Registry is able to show treatment changes over time and why those changes occurred. Repeat surveying, also known as a longitudinal study, helps researchers see the big picture for scientific studies but also helps doctors and patients see connections or trends in real-world care.
Lung Cancer Registry Research Studies
Below are the current studies that you will have access to through the registry. At any time, you can see a list of available surveys, download pdfs of surveys, as well as view surveys you completed in the past by logging in to your account and going to My Surveys.
Dummy Item to Prevent First One Open
Your content goes here. Edit or remove this text inline or in the module Content settings. You can also style every aspect of this content in the module Design settings and even apply custom CSS to this text in the module Advanced settings.
Lung Cancer Patient Study
The Lung Cancer Patient Study is an ongoing global study that consists of a baseline (initial) survey and then quarterly surveys to understand the lung cancer patient experience using the same data, or variables, over a period of time. The questionnaires ask about the patient’s background, overall health, lung cancer diagnosis, treatment history, treatment satisfaction and side-effects, patient quality of life, and disease changes. Lung Cancer Registry researchers can look for patterns in the data collected that will improve patient care, treatments, and quality of life in the long-term and identify trends and connections.
Time to Complete: 20-30 minutes
Status: Open
ALK Survey
The ALK survey is study focused on ALK positive patients to understand treatment preference, treatment tolerability and side-effects, treatment decision making and recommendations, and impact of treatment on quality of life.
Time to Complete: 5-10 minutes
Status: Open
Working Group:
- Eileen Curran, PhD, MPH, Takeda
- Emily Venanzi, PhD, ALK Positive Medical Committee
- Erin Schenk, MD, PhD, University of Colorado Anschutz Medical Center
- Jacinta Wiens, PhD, MS, GO2 for Lung Cancer
- Jennifer Blender, PhD, ALK Positive Medical Committee
- Jessica Lin, MD, Massachusetts General Hospital
- Mark Lin, PhD, Takeda
Caregiver Survey
Time to Complete: 20 minutes
Status: Open
Working Group:
- Andrew Cuipek, PhD , GO2 for Lung Cancer
- Anne-Marie Baird, PhD , LuCE
- Jacinta Wiens, PhD, MS , GO2 for Lung Cancer
- Jamie Studts, PhD , University of Colorado Cancer Center
- Joelle Fathi, DNP, RN, ARNP, ANP-BC, CTTS , University of Washington
- Kent Smith, B.S., MBA , University of Washington School of Nursing
- Kristin Richeimer, BS , International Association for the Study of Lung Cancer
- Maureen Rigney, LICSW , GO2 for Lung Cancer
- Miranda Goff, LICSW , GO2 for Lung Cancer
- Nick Dionne-Odom, PhD, RN, ACHPN, FPCN, FAAN , The University of Alabama at Birmingham
- Roslyn Spruit, Committee Member
- Tara Bowman, O’Neal Comprehensive Cancer Center
COVID-19 Survey
The COVID-19 survey is an ongoing global study consisting of a short questionnaire aimed at better understanding how lung cancer patient care, treatments and outcomes have been affected by COVID-19. This data will be combined with baseline and quarterly survey data within the Registry.
Time to Complete: 5-10 minutes
Status: Open
Immunotherapy Patient Reported Outcomes Survey
Who can participate? Patients older than 18 years of age, diagnosed with lung cancer, that had been treated with immunotherapy.
Time to Complete: 10-15 minutes
Status: Closed
- Heather Jim, PhD, Moffitt Cancer Center
- Adam P. Dicker, MD, PhD, Thomas Jefferson University
Sexual Health Assessment in Women with Lung Cancer (SHAWL) Survey
SHAWL is a landmark international research study aimed at assessing sexual dysfunction in women with lung cancer. This study is a partnership between the Lung Cancer Registry, Dr. Narjust Duma at University of Wisconsin., and a multidisciplinary team of investigators including patient advocates.
Time to Complete: 10-15 minutes
Status: Closed (Ended March 31, 2021)
Working Group:
- Amy Moore, PhD, GO2 for Lung Cancer
- Christine Heisler, MD, University of Wisconsin
- David Kushner, MD, University of Wisconsin
- Ivy Elkins, Lung cancer survivor and advocate, EGFR Resisters Lung Cancer Patient Group
- Jacinta Wiens, PhD, MS, GO2 for Lung Cancer
- Jennifer C. King, PhD, GO2 for Lung Cancer
- Jill Feldman, Lung cancer survivor and advocate, EGFR Resisters Lung Cancer Patient Group
- Lori Seaborne, PA, University of Wisconsin
- Mary J Fidler, MD, Rush Medical College
- Narjust Duma, MD, University of Wisconsin Carbone Cancer Center
- Rashmi Acharya, MS, GO2 for Lung Cancer