Patient-Focused Research

Goals:

The purpose of the survey is to collect data that can be used to help improve the life expectancy and quality
of life for ALK+ lung cancer patients worldwide:

What’s Involved:

Complete an online survey approximately every 6 months. (You’ll receive an email when a new survey is ready to complete.)

What Else to Know:

Patients around the world who have been diagnosed with ALK+ lung cancer are invited to participate. If needed, caregivers can complete the surveys on behalf of their loved ones.

This research is being conducted in collaboration with a team at an Academic Institution and funded by ALK Positive, Inc.

The survey is approved by the Institutional Review Board (IRB) and is fully HIPAA compliant to protect your privacy. All data are made anonymous by REDCap, Inc., a survey platform designed for private medical data collection.

To Get Started:

Register and learn about the ALK Life Study. You’ll receive a consent form to sign and survey forms by email.

Goals:

To learn more about how and why lung cancer develops in people ages 45 years and younger.

• Identify factors that may be related to lung cancer development in younger adults
• Find ways to better predict their cancer risks
• Learn more about tumor changes that could affect treatment

What’s Involved:

Complete an eligibility form, then speak briefly with a study team member to confirm eligibility and interest in participating.

• Complete two short questionnaires about your family and medical history.
• Share a copy of your medical records related to the cancer diagnosis. (All records are kept strictly confidential.)
• Provide blood and/or saliva samples.
• Optional: Give permission for the researchers to access and study your tumor tissue samples (from biopsy or surgery you’ve already had).

What Else to Know:

Patients must be US residents who were 45-years-old or younger AT DIAGNOSIS with either non-small cell lung cancer or small cell lung cancer to participate.

This research study is being conducted by Dana-Farber Cancer Institute and is funded by private and public research grants.

The study is fully HIPAA-compliant, and all data are secured to protect your privacy and personal information.

For More Information:

Visit the study website or email questions to younglungstudy@dfci.harvard.edu.

Goals:

To advance precision medicine for patients with ALK+ non-small cell lung cancer (NSCLC):

• Develop a deeper understanding of why current medicines for ALK+ NSCLC stop working over time (drug resistance) and how this resistance to TKI (tyrosine kinase inhibitor) medicines develops in the body’s cells
• Accelerate new treatment strategies based on this deeper understanding to delay or prevent TKI drug resistance and the growth and spread of cancer (progression)
• Improve life quality and survival for patients with ALK+ NSCLC

What’s Involved:

Complete an online questionnaire (Patient Intake form) about your medical history.

• For patients outside the University of Michigan health network, speak to a member of their study team by phone.
• During your lung cancer testing and treatment, agree to provide access to some of your fluid, blood, and tumor tissue samples. (Researchers will arrange for no-cost, privacy-protected transfer from your cancer treatment center.)

What Else to Know:

Study is enrolling patients who are 18 years or older with ALK+ NSCLC diagnosis.

Participants may be either US or non-US residents (You do not have to be a Michigan resident).

This study is being conducted by University of Michigan’s Rogel Cancer Institute and is being funded by a grant from the Richard Tam Foundation and its president Judith Tam, a patient with ALK+ NSCLC.

For More Information:

Visit the study website or email questions to ALK-Initiative@med.umich.edu.