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ALK+ UK 2026 Survey

1.Data consent

The success of our Facebook support group means we have the largest pool of ALK+ lung cancer patients in the world, outside the USA. Each patient has a different history and story to tell and collectively this information has the potential to be valuable to everyone who is affected by this disease. There is thankfully lots of world wide research and data around ALK+ LC which has led to increased survival. However, there is a limited amount of 'real world' UK data and by agreeing to take part in this survey you can contribute to raising the understanding of patients, researchers, clinicians and pharmaceutical companies. There is not as yet a standardised approach to the monitoring of ALK+ patients and the information you provide will assist the charity in advocating for best practice throughout the UK.

The previous surveys that we carried out provided valuable information but we now need to update it. We cannot know at this stage exactly where the results of this survey will take us but PLEASE help us take the next step....it should take you about 15/20 minutes, depending on your medical history.

The survey can be completed by the patient or by some one on their behalf but all the information must relate to the patient. It can also be completed on behalf of an ALK Positive patient who is no longer with us.

Debra Montague
Chair
ALK Positive Lung Cancer (UK)

1.The purpose of this survey is to gather information about the diagnostic process and treatment and care experiences of ALK-positive lung cancer patients. This information will help the charity to better understand the patient journey, to identify areas for improvement in care, to advocate for best practice throughout the UK and to raise awareness of non-smoking lung cancer.

All information you provide will be kept strictly confidential. Your responses will be aggregated and analyzed as group data, meaning no individual responses will be identifiable in any reports or publications. Only authorised staff of the Charity will have access to the raw data, and all data will be stored securely.

It is our intention to share the non-personal-identifiable data in this survey with researchers, relevant organisations and to use them to advocate for best practice throughout the UK.

ALK+UK's privacy policy can be viewed at - Privacy Policy.

I agree to the data I enter being used for the purposes stated above and to being stored on Survey Monkey. If I am filling this out on behalf of the patient, I confirm that the patient is fully aware of what their data will be used for.(Required.)