Surveys

This is an ongoing study for people with lung cancer. It includes questions about a person’s health history, lung cancer diagnosis, treatments, how they are doing, and quality of life.  

After finishing the first set of surveys, participants are asked to complete shorter surveys every few months.   

The purpose is to understand the lung cancer patient’s experience over a period of time and try to understand any changes that might have happened. 

• Who can join: Someone who is 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 has passed away).
• Estimated time to complete: About 20 minutes

The Lung Cancer Risk Survey is looking to understand who might have a higher risk of developing lung cancer. The survey asks many questions about the environment where a person was raised as well as their lifestyle. By answering these questions, researchers hope to find patterns in order to diagnose lung cancer earlier. 

The Risk Survey involves completing 4 shorter survey modules. The modules include questions about a person and their family’s medical history, diet and nutrition, physical activity, smoking history, work history as well as the environment that the person grew up in. 

Who can join: To join the Lung Cancer Risk Survey, you must: 

• Be 18 years old and older, AND at least one of the following: 

• • Use or used to use tobacco products 
  • Have a family history of lung cancer 
  • Worked in jobs with poor air quality (military, firefighters, miners) 
  • Been exposed to radon 
  • Have another lung disease (COPD, Pulmonary Fibrosis) 
  • Been exposed to major air pollution events (9/11 World Trade Center, wildfires) 

Estimated time to complete: About 5-10 minutes per survey module. 

Lung Cancer Risk Survey working group: 

• Andrew Ciupek, PhD, GO2 for Lung Cancer 
• Elise Domico, Patient Advocate  
• Jeffrey Volotta, MD, FACS, Kaiser Permanente Oakland Medical Center  
• Jody Ruth Steinhardt, MPH, CHES, NYC Health & Hospitals  
• Julie Herbstman, PhD, ScM, Columbia University Mailman School of Public Health 

The Caregiver Survey is for people anywhere in the world who help take care of someone with lung cancer. The survey asks about the caregivers’ needs, the support they receive, and the challenges they face, both emotionally and socially.  

The survey also looks at how being a caregiver affects their daily life and well-being. Follow-up caregiver surveys are offered every 6 months to help track how the caregiver’s experience changes over time.  

Who can join: To join the Caregiver Survey, you must: 

• Be 18 years old and older 
• Are a caregiver of someone with lung cancer (living or passed away) 
• For this study, 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 help with health care and daily tasks. This includes people who help manage medicines, track symptoms, or arrange doctor visits. It can also include help with shopping, cooking, cleaning, or home repairs. 
  • Parents, children, spouses, partners, or friends. 

Estimated time to complete: About 20 minutes

Caregiver Survey working group: 

• Andrew Cuipek, PhD, GO2 for Lung Cancer 
• Anne-Marie Baird, PhD, Trinity College Dublin 
• Jacinta Wiens, PhD, MS, Merck 
• Jamie Studts, PhD, University of Colorado Anschutz Medical Campus 
• Joelle Fathi, DNP, RN, ARNP, ANP-BC, CTTS, GO2 for Lung Cancer 
• Kent Smith, BS, MBA, University of Washington School of Nursing 
• Kristin Richeimer, BS, Council of Colleges of Acupuncture and Herbal Medicine 
• Maureen Rigney, LICSW, GO2 for Lung Cancer 
• Nick Dionne-Odom, PhD, RN, ACHPN, FPCN, FAAN, University of Alabama at Birmingham School of Nursing 
• Roslyn Spruit, Committee Member 
• Tara Bowman, O’Neal Comprehensive Cancer Center at UAB

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.

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.

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.

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.

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.