An observational study in Ataxia Telangiectasia, sponsored by University of Nottingham. Completed at 1 site in United Kingdom. Open to participants aged 4 Years to 18 Years. Per ClinicalTrials.gov, last updated 2026-11-06.
Sponsored by University of Nottingham · Observational
Ataxia Telangiectasia (A-T) is an inherited disorder characterised by cerebellar neurodegeneration, immunodeficiency and respiratory disease. People with A-T have abnormal DNA repair and consequently have an increased risk of cancer. Despite this, current guidelines for management of children and young people with A-T do not include cancer surveillance.
Improvements in MRI technology have allowed whole-body MRI (WB-MRI) scanning with relatively short acquisition times. Currently, WB-MRI protocols are used for diagnosing and monitoring some primary and secondary cancers, including cancer surveillance in people with the Li-Fraumeni syndrome, which is another genetic cancer predisposition syndrome. Therefore, the research team believe that whole-body MRI provides a safe method for cancer surveillance in children and young people with A-T. However, the investigators do not know whether cancer surveillance in children and young people with A-T using whole-body MRI is feasible and desirable.
The research team proposes a feasibility study of MRI-based cancer surveillance with qualitative evaluation of participant experience with the primary aim to establish:
Ataxia Telangiectasia (A-T) is an autosomal recessive disorder characterised with cerebellar neurodegeneration, immunodeficiency, respiratory disease and cancer susceptibility (22% by age 20). A-T is a complex disorder caused by mutations in the Ataxia Telangiectasia Mutated (ATM) gene which creates highly unstable ATM protein fragments. In the classical clinical presentation of A-T there is no kinase activity due to the absence of ATM protein. One consequence of this is that cellular DNA-repair pathways are compromised which allows breaks in DNA strands leading to genomic instability and/or cell death. As a result, there is an increase sensitivity to ionizing radiation and elevated cancer risk. Children less than 16 years with classical A-T demonstrate a predisposition to the development of different types of lymphoid cancers (lymphoma and leukaemia). However non-lymphoid tumours can also occur.
The current practice at the United Kingdom Paediatric A-T clinic for cancer surveillance is to perform blood testing, including full blood account, liver function tests and measurement of circulating tumour marker Alpha-fetoprotein. Full blood account can detect an increase white cell count and abnormal white cell populations and therefore, is effective in detecting most types of leukaemia. Elevation of Alpha-Fetoprotein can be a marker of different types of tumours, for example hepatocellular carcinoma and liver metastases, however is also often elevated in people with A-T. Therefore, its use for detecting cancer in A-T is uncertain and not currently evidence-based. The lack of evidence-based guidelines regarding the optimal cancer surveillance strategy in children with A-T could delay the diagnosis and consequently the treatment plan.
Magnetic Resonance Imaging (MRI) technology has progress rapidly since its discovery, making it possible currently to perform whole-body MRI scans with relatively short acquisition times. Presently, whole-body MRI protocols that include diffusion-weighted imaging and structural (T1/Dixon) acquisitions are used for diagnosing and monitoring cancers (sarcomas, metastases and haematological tumours like myeloma). A further advantage of this technique compared to computed tomography is that does not involve radiation, which is important given the elevated radiosensitivity of people with A-T.
The value of whole-body MRI in people with cancer predisposition has been shown in Li-Fraumeni syndrome, syndrome that, like A-T, is associated with increased risk of haematological and solid tumours. Despite the successful results of using a multimodality protocol for cancer surveillance in Li-Fraumeni syndrome, it cannot be assumed that the results will be the same in people with A-T as the also have respiratory and neurological dysfunction that could influence the tolerability and image quality of the MRI scans. Also, the profile of the tumours differs between these two syndromes. To date, the value of whole-body MRI for cancer surveillance in children and young people with A-T has not been demonstrated. It is unknown whether is possible to obtain diagnostic images, and the spectrum of findings (both cancer and non-cancer) that can be detected has not been reported.
In addition to technical considerations, it is vital to understand the perspectives of people affected by A-T regarding cancer surveillance. Participation in a cancer surveillance programme could increase anxiety for both the participant and family, and it is possible that negative psychological aspects could outweigh the perceived benefits or earlier cancer detection. Compared to other screening programmes, it should be noted that these families are already having to deal with a family member with complex progressive chronic disease, and so emotional and psychological capacity to deal with added anxiety may be limited. Hence, it is important to know, before conducting a full scale trial that will inform the current lack of evidence-based guidelines, whether cancer surveillance in children and young people with A-T using whole-body MRI is feasible and desirable.
42 studies on the registry are indexed under Ataxia Telangiectasia; 7 are open to participants now.
This study's enrollment of 37 is below the median of 60 across 12 observational studies indexed under Ataxia Telangiectasia.
Browse Ataxia Telangiectasia studies →University of Nottingham is the lead sponsor of 465 studies on the registry; 80 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Children and young people with Ataxia Telangiectesia and their parents / carers from United Kingdom registred in Paediatric A-T clinic in Nottingham.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
A reason a treatment, test or procedure should not be given to a particular person, such as an allergy, another illness or a medicine they take.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Contraindication
A reason a treatment, test or procedure should not be given to a particular person, such as an allergy, another illness or a medicine they take.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
One whole-Body MRI that takes approximately 35minutes One blood test, which it is an optional component at this stage
Number of Children and Young People With A-T Who Underwent the Whole-body MRI for Cancer Surveillance
rate of completion of whole-body MRI protocol: number of children and young pleople with A-T who underwent the Whole-body MRI protocol
Time frame: 1 year
Number of Children and Young People With A-T Who Completed the Whole-body MRI for Cancer Surveillance
duration of scan tolerated (if not full protocol): number of children and young people with A-T who completed the full whole-body MRI protocol, who partially completed the same protocol, and who did not do the whole body MRI scan
Time frame: 1 year
Image Quality of the Whole-body MRI for Cancer Surveillance
Assessment of the diagnostic image quality - number of participants with Image quality between acceptable to excellent (threshold 65%) completing the scan
Time frame: 1 year
Assessment of the Psychological Impact of the Participants and Their Families/Carers Throughout the Study
Assessment of the participant/parent (carer) experience in the lead up to, during and after the surveillance MRI and blood test (when applicable), to assess the emotional impact regarding the diagnostic tests waiting times and to establish the emotional and informational support needed during the process of surveillance
Time frame: 1 year
Number of Abnormal Findings on Whole-body MRI and Blood Metrics (When Applicable)
Assessment of the prevalence of cancer and non-cancer abnormalities detected on whole-body MRI in this population - number of participants with abnormal findings
Time frame: 1 year
Number of Participants Wtih Abnormal Findings According to Locations of Abnormal Findings on Whole-body MRI
Assessment of the spectrum of cancer and non-cancer abnormalities detected on whole-body MRI in this population
Time frame: 1 year
Type of Abnormal Findings on Whole-body MRI and Blood Metrics (When Applicable)
Assessment of the spectrum of cancer and non-cancer abnormalities detected on whole-body MRI in this population
Time frame: 1 year
Number of Children and Young People With A-T Who Were Recommended for Further Investigation
Assessment of the rate of subsequent medical management based on the MRI and blood test (when applicable) findings
Time frame: 1 years
| Milestone | Children and Young People With A-T | Parents |
|---|---|---|
| Started | 18 | 19 |
| Completed | 16 | 17 |
| Not completed | 2 | 2 |
rate of completion of whole-body MRI protocol: number of children and young pleople with A-T who underwent the Whole-body MRI protocol
| Participants | Children and Young People With A-T |
|---|---|
| Number of Children and Young People With A-T Who Underwent the Whole-body MRI for Cancer Surveillance | 16 |
duration of scan tolerated (if not full protocol): number of children and young people with A-T who completed the full whole-body MRI protocol, who partially completed the same protocol, and who did not do the whole body MRI scan
| Participants | Children and Young People With A-T |
|---|---|
| Full scan | 15 |
| Partially completed | 1 |
| Scan not performed | 2 |
Assessment of the diagnostic image quality - number of participants with Image quality between acceptable to excellent (threshold 65%) completing the scan
| Participants | Children and Young People With A-T |
|---|---|
| Image Quality of the Whole-body MRI for Cancer Surveillance | 16 |
Assessment of the participant/parent (carer) experience in the lead up to, during and after the surveillance MRI and blood test (when applicable), to assess the emotional impact regarding the diagnostic tests waiting times and to establish the emotional and informational support needed during the process of surveillance
| Participants | Children and Young People With A-T | Parents |
|---|---|---|
| Anxiety is a familiar feeling | 1 | 17 |
| MRI scanning is challenging for some children and families | 1 | 17 |
| Preparation is essential to reduce stress | 1 | 17 |
| Whole Body -MRI provides the reassurance about the physical health that families need | 1 | 17 |
| Whole Body -MRI experience turned out to be a positive experience | 1 | 17 |
| Whole Body -MRI allows families to be proactive | 1 | 17 |
Assessment of the prevalence of cancer and non-cancer abnormalities detected on whole-body MRI in this population - number of participants with abnormal findings
| Participants | Children and Young People With A-T |
|---|---|
| Number of Abnormal Findings on Whole-body MRI and Blood Metrics (When Applicable) | 4 |
Assessment of the spectrum of cancer and non-cancer abnormalities detected on whole-body MRI in this population
| Participants | Children and Young People With A-T |
|---|---|
| Brain | 16 |
| Liver | 2 |
| Breast | 1 |
| Bone marrow | 1 |
| Subcutaneous tissue | 2 |
Assessment of the spectrum of cancer and non-cancer abnormalities detected on whole-body MRI in this population
| Participants | Children and Young People With A-T |
|---|---|
| Cerebellar atrophy | 16 |
| Benign cyst | 1 |
| Subcutaneoues tissue oedema | 2 |
| Abnormal bone marrow findings | 1 |
| Granuloma disease | 2 |
Assessment of the rate of subsequent medical management based on the MRI and blood test (when applicable) findings
| Participants | Children and Young People With A-T |
|---|---|
| Number of Children and Young People With A-T Who Were Recommended for Further Investigation | 3 |
Collected over 1 year. Non-serious events are listed at a 0% frequency threshold.
| Group | Deaths | Serious | Other |
|---|---|---|---|
| Children and Young People With A-T | 0/18 (0%) | 0/18 (0%) | 0/18 (0%) |
| Parents | 0/19 (0%) | 0/19 (0%) | 0/19 (0%) |
Children and young people with Ataxia telangiectasia and their families
| Age, Customized(years) | Children and Young People With A-T | Parents | Total |
|---|---|---|---|
| Median | 11 (4 to 16) | — | 11 (4 to 16) |
| Sex: Female, Male(Participants) | Children and Young People With A-T | Parents | Total |
|---|---|---|---|
| Participants enrolled — Female | 8 | 13 | 21 |
| Participants enrolled — Male | 10 | 6 | 16 |
| Race and Ethnicity Not Collected(Participants) | Children and Young People With A-T | Parents | Total |
|---|---|---|---|
| Count of participants | — | — | 0 |
PDFs hosted by the registry, ClinicalTrials.gov.
Plan to share: Undecided
Ran from Oct 2022 to primary completion in Nov 2023, 13 months.
Results were first posted in Nov 2026, 2 years 11 months after primary completion.
How these figures are worked out, and which studies are left out of them.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
This study is completed, as verified in Aug 2025. You cannot join it, but the record below documents what was studied.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.