Retrospective WGS Study
This study is reviewing past information from children and young people up to 21 years old who were diagnosed with cancer and had a special genetic test called whole genome sequencing (WGS) through the NHS. WGS looks at all of a person's genes to find changes that might be linked to their cancer. The main goal is to find out if this genetic testing program, which started in late 2020, has actually made a helpful difference in how these young patients are cared for. By carefully checking their medical notes, researchers want to see if having WGS has led to better treatment decisions or improved understanding of their illness. This information will help the government decide if this program should continue in the future.
At a glance
What is this study about?
Imagine your body is like a very complicated instruction manual, and your genes are the words in that manual. When someone has cancer, sometimes there's a typo or a change in these instructions. Whole genome sequencing (WGS) is a special test that reads through every single word in this manual to find those tiny changes. The NHS started offering this test to children and young people with cancer in late 2020.
This particular study is like looking back through old school reports to see how well a new teaching method worked. Researchers are reviewing the medical records of young patients who had WGS. They want to understand if finding these genetic changes helped doctors make better choices about their treatment or understand their cancer more deeply. It's a way of checking to see if this new test is truly beneficial in real-life situations.
The results from this study are very important. Not only will they add to our understanding of cancer, but they will also help the government decide whether to continue funding and using this whole genome sequencing programme for children with cancer across the country. It's about making sure that the resources are being used in the best way possible to help young patients.
Key takeaways
- This study is looking at past medical records.
- It aims to see if whole genome sequencing helps children with cancer.
- No patient interaction or new treatments are involved.
- Information will help shape future NHS policies.
- This is about improving care for young cancer patients.
Who may be eligible?
This study is looking at information from children and young people who have already gone through treatment. You wouldn't directly participate in this study, but if you meet certain criteria, your past medical information might be included.
The researchers are interested in records from anyone up to the age of 21 years old who was diagnosed with a type of cancer or tumour. Crucially, they must have been offered and received the special NHS whole genome sequencing test as part of their care.
If someone was older than 21, didn't have a cancer diagnosis, or wasn't offered the NHS whole genome sequencing test, their information would not be part of this particular review.
- Were diagnosed with any type of cancer or tumour?
- Were up to 21 years old at the time of diagnosis?
- Were offered and received NHS whole genome sequencing?
- Had your treatment and care between late 2020 and now?
This is a guide only — the research team will confirm whether you can take part.
What does participation involve?
This study isn't about new treatments or tests. Instead, it's a 'retrospective' study, meaning researchers are looking back at information that has already been collected as part of routine medical care. If you or your child's medical notes are included, you would not need to do anything extra. There are no visits, no new assessments, no medication, and no follow-up appointments related to this study. Your medical records would simply be reviewed by the research team.
Potential risks and benefits
Locations (1)
- Wellcome Sanger InstituteCambridge, United Kingdom
Common questions
What is 'whole genome sequencing'?
It's a special test that reads all the genetic instructions in your body to look for changes linked to cancer.
Do I need to do anything if my child's records are part of this study?
No, you don't need to do anything. The study only looks at existing medical notes, so there are no extra appointments or tests for your child.
Will my child's personal information be kept private?
Yes, all medical information is handled with strict confidence and privacy rules, just like all patient records.
What is the study hoping to find out?
The study wants to see if the whole genome sequencing test has genuinely helped doctors in treating children and young people with cancer.
How will the results of this study be used?
The results will help the government decide whether to continue the NHS whole genome sequencing programme for children with cancer in the future.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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