Longitudinal Survey of ALK+ Cancer Patients
Self Registration

Q&A

Why should I do this survey?

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 de-identified 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 survey?

• 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 patients.

What items should I have ready before doing the survey?

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 survey?

• 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.

Why do some forms have to be completed at different timepoints?

This survey is capturing your journey over time, at different timepoints, like time-lapse photos, rather than just a single point in time, like one photo. Some of the forms will remember your answers from the previous timepoint, so that you only have to enter any changed responses.  There are forms capturing your situation at the following timepoints:

1. Just Before Lung Cancer Symptoms- the timepoint just before you had any symptoms that you think were related to your lung cancer
2. Time of Initial Diagnosis -the time when you were diagnosed with ALK-positive lung cancer
3. Time of Completing Form - the time when you complete the Time of Completing Form.
4. 6- month Follow Up- 6-months after completing the Time of Initial Survey, and then every 6 months thereafter.  

When should I complete forms?

An email will automatically be sent periodically to you, letting you know when there are new forms available to answer.

Can a caregiver complete the survey if the patient is deceased?

Yes. That data will be extremely valuable to researchers.

Why am I being asked for my email address and name?

REDCap data manager will notify you by email of any new surveys forms that are ready for you to complete or update.

Most of the follow up survey forms will generally take a lot less time to complete, as your previous answers will show, so you will only need to enter or update any new information.

You may also be sent an email by REDCap, to see if you wish to consent to sharing your email in order to be invited to participate in further research.

Your name and email will NEVER be shared elsewhere, unless you give your specific signed consent.

How long will the survey be open for?

Once a patient is registered, the survey will be open indefinitely.