The ALK Register
Join
The charity maintains a register of ALK-positive patients in the UK and Ireland. The register may also include a close family member or friend.
This is a voluntary register with no requirement for patients and their families to register.
Those who do wish to register are asked to complete a questionnaire which requests some basic personal information, e.g date diagnosed, stage at diagnosis and age at diagnosis.
No identifiable information will be provided to any other organisation or person. Anonymised information may used to contribute to the advocacy work of the charity.
As of April 2025, over 400 people have completed the questionnaire, the majority being patients. This is the largest register of ALK-positive patients and family members in the world, outside the USA.
About the Register
Benefits of Registering
Research
Researchers, including acedemics, scientists, healthcare professionals and pharmaceutical companies, often seek to learn about the real-world experiences of patients. By being part of a large pool of patients and family members, you could contibute to sharing this experience.
The more people participating in research, the more relvant is the data which is produced.
We would not give your personal details to any researcher. We would inform you of the research and your particpation would be voluntary.
We will keep you up to date on clinical trials that are available in the UK and Ireland.
Surveys
From time to time, the Charity carries out surveys of our members to gather information about all aspects of their diagnosis, treatment and care. Past surveys have been about
frequency of scans
Side effects
Pauses in treatment
Blood clots
Reduction of dosage
Brain metastases
and more
We use the information to identify variations in the standard of care and this gives us the evidence to advocate for best practice throughout the UK and Ireland.
Quarterly Newsletter
The Charity publishes a quarterly Newsletter which contains information about the latest developments in treatment and about the services that the Charity provides.
Emails
The Charity may email members about events and activities that have been arranged and about the regional lunches that are taking place in their area.