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 Survey is an ongoing international study that consists of answering questions about the person with lung cancer’s medical history, diagnosis, treatment, outcomes, and quality of life. After the first set of short surveys, participants are asked to complete additional surveys every three months. The purpose is to understand the lung cancer patient experience over a period of time and try to understand any changes that might have occurred.

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: 5-10 minutes
Status: Open
Small Cell Lung Cancer Survey
The small cell lung cancer (SCLC) survey is a brief survey focused on the needs of the individual diagnosed with SCLC or the caregiver of someone diagnosed with SCLC (living or deceased). The survey is looking to understand the treatment and decision-making process of someone diagnosed with SCLC as well as any gaps in support services or needs.

Eligibility: An individual diagnosed with SCLC over the age of 18 or a caregiver of someone with SCLC (living or deceased).
Time to Complete: 5-10 minutes
Incentive: A $25 USD Amazon or Visa gift card is available for those who qualify and complete the survey.
Status: Open

Working Group:

  • Jennifer Temel, MD, Professor of Medicine, Harvard Medical School; Director Cancer Outcomes Research and Education, Massachusetts General Hospital Cancer Center
  • Kerri Susko, LISW-CP, OSW-C, Counselor, Center for Integrative Oncology and Survivorship; Director, Cancer Support Community at Prisma Health Center Institute
  • Tim Stancell-Codron, Patient Advocate
  • Amy Kampschroeder, MA, OTR/L, CHES, GO2 for Lung Cancer
  • Jennifer King, PhD, GO2 for Lung Cancer
  • Heather Law, MA, GO2 for Lung Cancer
  • Maria Watson, Sr. Manager, Advocacy Relations, Amgen
  • Diana Gauto, Clinical Research Sr. Medical Scientist, Amgen
  • Xerxes Pundole, Observational Research, Sr. Manager, Amgen
ALK Survey

The ALK survey is a series of questions focused on people who were diagnosed with the ALK positive biomarker. This survey looks to understand the person’s treatment plan, side-effects and quality of life.

Eligibility: Individuals older than 18 years of age, who have tested positive for the ALK biomarker.

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: 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
The Caregiver Survey is an international survey that focuses on the personal needs of individuals taking care of someone with lung cancer. The short questionnaire looks to understand what gaps exist in support for caregivers, how to meet these needs, the social and emotional impacts of being a caregiver, and their quality of life. The survey is offered every six months to understand the caregiver experience over a period of time.

Eligibility: A caregiver, older than 18 years of age, of a person diagnosed with lung cancer (living or deceased).

For the purposes of this survey caregivers are:

  • People who help a family member or friend who has been diagnosed with lung cancer
  • People who are not paid for the help they provide
  • People who take care of health care tasks like managing medications and symptoms or coordinating services and/or household tasks like shopping and cooking, maintenance, and cleaning
  • Parents, children, spouses, partners, or friends

Time to Complete: 20 minutes
Incentive: A $10 USD Amazon or Visa gift card may be available for those who qualify and complete the follow-up surveys.
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 international study consisting of a short questionnaire aimed at improving our understanding of how the care of someone with lung cancer, such as their treatments and outcomes, may have been affected by COVID-19. This data will be collected in the Registry during the initial surveys and in the follow-up questionnaires every three months.

Eligibility: Individuals 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: 5-10 minutes
Status: Closed
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 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

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

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