Longitudinal Survey of ALK+ Cancer Patients (now called the ALK Life Study)

Have you been diagnosed with ALK+ lung cancer?

Please join our survey and let your experiences help develop new treatments, practices and policies for lung cancer patients.

Click on this link to begin:

https://redcap.link/alkpositivesurvey

FAQs

Why should I do this ALK Life Study?

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:

  • Data for researchers, to help find improved treatments

  • Data for oncologists, to improve quality and consistency of patient care

  • Data for advocates, to support more funding for ALK+ lung cancer research and improved care for ALK+ lung cancer patients

Who should participate?

  • Our goal is for EVERY ALK+ lung cancer patient, or their caregiver, to participate in the study. The higher the number of participants, the more the data can help researchers, oncologists and advocates.

Can a caregiver complete the survey on behalf of a patient?

  • Yes. Please answer all questions with the help of the patient, if possible.

  • Complete all questions in the survey forms as though it were the patient answering.

How is my privacy maintained and how is my information protected?

  • The survey platform is by REDCap, and is specifically designed for medical data collection. The survey is fully HIPAA compliant to completely protect your privacy. Your information will be completely deidentified by REDCap, not by anyone from ALK Positive.

  • The study has been Institutional Review Board (IRB) approved. The function of the IRB is to review research studies to assure the protection of the rights and welfare of the human subjects. Being an IRB approved study enables researchers to publish papers in journals based on the findings from the data, which will help all researchers, oncologists and advocates.

What is special about this ALK Life Study?

  • The survey is longitudinal. This means you will be asked to update your data over time. This survey is capturing your journey over time, like time-lapse photos, rather than just a single point in time, like one photo.

  • The survey was created by and for ALK+ lung cancer patient

What items should I have ready before doing the ALK Life Study?

If available, have the following items at hand:

  • All biopsy reports

  • All scan reports

  • A list of your medications and supplements

How do I participate in the ALK Life Study?

  • Click the web link provided to the survey

  • Register (if first time) or sign in (if already registered)

  • After completing the registration, you’ll receive an email with an express link to access the forms in the assigned order.

  • Select the first form that is not completed

  • Complete the form

  • Select the next form that is not completed and complete that form. Please complete all forms. You will be sent regular reminder emails for any survey forms still needing to be completed.

How long will it take to complete the forms?

  • The time required to complete each survey form will vary for each form, and for each participant. The time required could be as little as one minute in some cases, to over 30 minutes in other cases.

  • Each survey form can be completed all at once, or you can save your partly completed form at any time and resume completing the form later. With the ‘Save and Return Later’ option, it will save your progress. You can then exit by clicking the Exit button on the bottom of the page. You will need to use the link in the email to return to where you left off.

If you have any questions, or need to start your study over for some reason, please contact ALKLifeStudy@alkpositive.org