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.

Specialized surveys

You also have the opportunity to complete occasional specialized research surveys. These are surveys that are created by a multidisciplinary team of Registry staff, patients, survivors or caregivers, scientific researchers, clinicians, or other stakeholders with expertise on the topic.

Security & privacy

The information provided is completely secure; the user decides who sees the information, how it will be used and if they want to be contacted by researchers. Whether you have been diagnosed with lung cancer or have provided care for someone with lung cancer, your contributions are meaningful.

Save for later

All surveys can be partially completed, saved, and finished at a later time. Remember that as long as caregivers, friends, and/or family members have access to your medical records, they can input the Registry data for you.

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.

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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.

Eligibility: Patients older than 18 years of age diagnosed with lung cancer or a caregiver of a person that has been diagnosed with lung cancer (living or deceased).
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.

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 Foundation for Lung Cancer
Jennifer Blender, PhD, ALK Positive Medical Committee
Jessica Lin, MD, Massachusetts General Hospital
Mark Lin, PhD, Takeda

Caregiver Survey

There has been an increased focus on research regarding the ability of caregivers to adequately meet the needs of the patient they are caring for. However, the caregiver’s own personal needs and quality of life are often under-reported and under-studied. It is known that caregivers often experience emotional distress and neglect their own wellbeing and needs while caring for the patient, which may impact their ability to best support the patient. This survey is an international survey focused on the caregiver to examine the personal needs of lung cancer caregivers, what gaps exist in support for caregivers to meet these needs, the social and emotional impacts of being a caregiver, and their quality of life.

Eligibility: A caregiver, older than 18 years of age, of a lung cancer patient diagnosed with lung cancer (living or deceased).
Time to Complete: 20 minutes
Status: Open

Working Group:

Andrew Cuipek, PhD , GO2 Foundation for Lung Cancer
Anne-Marie Baird, PhD , LuCE
Jacinta Wiens, PhD, MS , GO2 Foundation 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 Foundation for Lung Cancer
Miranda Goff, LICSW , GO2 Foundation 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.

Immunotherapy Patient Reported Outcomes Survey

The immunotherapy patient reported outcome survey aimed to understand side effect and outcomes of people with lung cancer who had been treated with immunotherapy (immune checkpoint inhibitors).

Who can participate? Patients older than 18 years of age, diagnosed with lung cancer, that had been treated with immunotherapy.

Eligibility: Patients older than 18 years of age, diagnosed with lung cancer, that has been treated with immunotherapy.
Time to Complete: 10-15 minutes
Status: Closed

Working Group:

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.

Eligibility: Any woman over the age of 18 years of age who has been diagnosed with lung cancer.
Time to Complete: 10-15 minutes
Status: Closed (Ended March 31, 2021)

Working Group:

Amy Moore, PhD, GO2 Foundation 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 Foundation for Lung Cancer
Jennifer C. King, PhD, GO2 Foundation 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 Foundation for Lung Cancer

To participate in one of our studies simply join the Lung Cancer Registry

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