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:
- Just Before Lung Cancer Symptoms- the timepoint just before you had any symptoms that you think were related to your lung cancer
- Time of Initial Diagnosis -the time when you were diagnosed with ALK-positive lung cancer
- Time of Completing Form - the time when you complete the Time of Completing Form.
- 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.