The David Peake Study to test the feasibility of whole-body MRI for cancer surveillance in children and young people with Ataxia Telangiectasia

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Research Project information

Principal researcher: Dr Rob Dineen
Institute: University of Nottingham
Cost: £100,556.59 over 24 months
Start Date: 1st of October 2020 (no cost extension until 30th September 2023 granted in September 2022)

What are the researchers proposing to do?
 Dr Rob Dineen and his team believe that the combination of an MRI scan of the whole body together with a blood test is a good way to find hidden cancers in children and young people with the inherited disease Ataxia Telangiectasia (A-T). In this study which the first of its kind in A-T, they want to see:

  • whether this type of MRI scan is acceptable to the children and young people with A-T and their families
  • whether having the MRI scan and blood test causes any additional stress for the people who take part, and
  • whether the MRI scan and blood test are able to find hidden cancers.

They will also contact experts around the world who treat people with A-T to find out their views and current policies on looking for hidden cancers.

This study is a relatively small to start but if they find that the combination of whole body MRI scans and blood tests are acceptable to the people who take part and their families, the next step will be to carry out a much larger study to show that this approach is really effective at screening for hidden cancers in children and young people with A-T.

Why?
It is known that children and young people with A-T have a much higher risk of developing cancer compared to people without A-T. It is also important to try to find cancers early on when they are still ‘hidden’ (i.e. before they start to cause problems), so that treatments can be started earlier.  However, the best way to look for ‘hidden’ cancers before they start to cause problems is currently unknown.  Some type of medical scans like CT scans or PET scans are good for showing cancers but use radiation, and this is a problem for people with A-T as their bodies are very sensitive to radiation.

MRI scans don’t use radiation, which is great for people with A-T, but we don’t know how good this type of  scan will be for finding hidden cancers in children and young people with A-T.  MRI scans take a long time and require the person having the scan to lie very still inside a narrow tube like area, which can cause anxiety for some younger children.  In addition, knowing that your scan could find a hidden cancer may add to the worry.  The team believe that MRI scans could be a really useful way to find cancers in children with A-T, but before they carry out a large trial to prove this, they will initially carry out a study in a small group of people with A-T to check that the experience of having the scan is acceptable.

How will the research be done?
The team will hold a structured workshop involving around 30 people to understand the views and worries about looking for hidden cancers in children and young people with A-T.  They will recruit participants who have a range of perspectives, including people with A-T who themselves may be concerned about the cancer risk or who have been diagnosed and treated, parents of children with A-T who may have concerns about risk of cancer in the children in the future, and parents who have been through the experience of having a child diagnosed with and treated for cancer.  Having this broad range of views will help them to understand the issues that concern people and will allow the team to tailor the visit for the MRI scan and blood tests in a way that reduces anxiety for the children and young people taking part.

They will then ask children and young people with A-T to join the study, with the aim of including 20 people with A-T and their families. Following careful preparation the participants will undergo the MRI scan and blood tests (participants are allowed to opt out of the blood test if they want), which will establish:

  • whether children and young people are able to complete the full MRI scan
  • whether the images that we get from the MRI scan are good quality (if participants move during the MRI scan it can make the images blurry)
  • whether the scan and blood test show any possible hidden cancers, and if so what other tests or treatments are needed.

After each participant has attended for the MRI scan and blood test an interview will be conducted to understand the experience of the child or young person and their family.  This is important to because if a larger study conducted, the participants will probably have to come for a MRI scan and blood test every year, and we want to know whether the experience was acceptable or whether there are aspects that need to be changed.

The team will also be contacting experts in A-T from around the world to find out what their current policies and views are about looking for hidden cancers in A-T, and whether they would consider taking part in a larger trial in the future.

How could it make a difference to the lives of those affected by A-T?
It should be known by 2022 whether the approach of using an MRI scan and blood tests is acceptable to the participants and produces results that can be trusted.  At this point, a larger trial will be carried out to prove that the approach is effective in finding hidden cancers before they would otherwise be detected, allowing earlier treatment.   A larger trial could also show that searching for hidden cancers using this novel approach helps to reduce poor outcomes (such as death, spread of cancer or development of more aggressive cancers).  The larger trial is expected to last approximately 5 years, and because A-T is a rare disease there will be a need to link up with A-T clinics in other countries.  Assuming the larger trial begins in 2023, it is hoped that the answers will be found by 2028 or 2029.  Based on this, it is hoped that the full study will dramatically change the national and international guidelines for finding hidden cancers in people with A-T within around 10 years.

This research project was part funded thanks to a generous donation from the David Peake Appeal. David lost his battle with Pancreatic Cancer in 2016 and his family chose to commit the funds raised by his work colleagues at Grange Aston Martin and Cambria Automobiles PLC towards this project.