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Inclusion criteria

Aged 13-25yrs

First cancer diagnosis

Cancer requiring treatment (chemotherapy, radiotherapy or surgery)

Exclusion criteria

Not requiring treatment

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Inclusion Criteria - group 1

Age 4-25yrs old

New ALL/LBL

Inclusion Criteria - group 2

Age 1-25

Previous diagnosis of ALL/LBL

Documented central neurological toxicity

Exclusion Criteria - group 1

Previous neurodevelopmental disorder

Visual impairment

Relapsed or secondary cancer

Exclusion Criteria - group 2

Neurological symptoms secondary to cerebral sinus venous thrombosis

Neurological symptoms secondary to peripheral neuropathy

Clear cause for neurological event eg. head injury

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Inclusion Criteria

All children, adolescents or young adults with a primary renal tumour (or extra-renal Wilms tumour)

Exclusion Criteria

Patients who do not give/whose parents/guardians do not give consent for inclusion of their clinical/imaging or biological sample data

NB: patients/parents can consent separately to the biological studies so may still be registered if they consent for inclusion of their clinical/imaging data but will be excluded from the biological studies if they so wish

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Inclusion criteria

Patients with a relapsed or refractory paediatric tumour

For solid tumours: FFPE tumour or fresh frozen tumour available within 8 weeks prior to trial entry

For leukaemia: Viable fresh or frozen Bone Marrow aspirate sample taken within 8 weeks prior to trial entry

Written informed consent

Exclusion criteria

No relapse tissue available to send

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Inclusion criteria
• Diagnosis of AML
• Age <18 years at trial entry
• No prior chemotherapy or biological therapy
• Normal cardiac function
• Fit for protocol chemotherapy
• Documented negative pregnancy
• Patient agrees to use effective contraception (patients of childbearing potential)
• Written informed consent

Exclusion criteria for all randomisations
• Acute Promyelocytic Leukaemia
• Down Syndrome
• Blast crisis of chronic myeloid leukaemia
• Relapsed or refractory AML
• Bone marrow failure syndromes
• Concurrent treatment or administration of any other experimental drug or with any other biological therapy for AML/high risk MDS/isolated MS
• Pregnant or lactating females

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PI - Dr Bhatnagar
Research Nurses - Elise Longworth, Becca Walker & Beckie Weaver 01865 234982
Trials Practitioner - Evie Pearson 01865 227747

Email - paedhaem.oncresearch@nhs.net

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Inclusion criteria

Definitive diagnosis of Langerhans cell histiocytosis

Age less 18 years at time of definitive diagnosis

Met inclusion criteria for the respective stratum

Signed written informed consent

Exclusion criteria

Stratum dependent

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PI - Dr Amy Mitchell
Research Nurses - Elise Longworth, Becca Walker & Beckie Weaver 01865 234982
Trials Practitioner - Evie Pearson 01865 227747

Email - paedhaem.oncresearch@nhs.net

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Inclusion criteria - for trial entry only

Histologically confirmed diagnosis of RMS (except pleomorphic RMS)

Written informed consent from the patient and/or the parent/legal guardian

**specific inclusion/exclusion criteria for separate randomisations can be found in the trial protocol**

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Inclusion Criteria:

Patients with newly diagnosed T-lineage or precursor B-cell ALL.

Age between 1-45 years*.

Written informed consent from parents/guardians and patient

Exclusion Criteria:

Age ≥46 years at diagnosis.

Age <365 days at diagnosis.

Patients with a previous malignant diagnosis.

Relapse of ALL

Mature B-ALL

Philadelphia positive ALL

Treatment with systemic corticosteroids for more than one week and/or other chemotherapeutic agents within 4 weeks prior to diagnosis.

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At diagnosis: BMA x2, Blood x2, frozen tissue, FFPE & H&E slides

Blood (at different timepoints in induction dependent on risk)

At relapse: BMA x2, Blood x2, frozen tissue, FFPE & H&E slides

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PI - Dr Esther Blanco
Research Nurses - Elise Longworth, Becca Walker & Beckie Weaver 01865 234982
Trials Practitioner - Evie Pearson 01865 227747

Email - paedhaem.oncresearch@nhs.net

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Serum sample at diagnosis then at 1,2 & 3 yrs post diagnosis

Data collection at diagnosis then at 1,2 & 3 yrs post diagnosis

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CogState software program (series of short games aimed at assessing processing speed, attention, visual recognition, working memory and executive ability

CSF BIOMARKERS 1-2 mls at time of theraputic LP

DNA FOR GENOTYPING Saliva or BMA

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Inclusion Criteria:

Metastatic Neuroblastoma/metastatic response during chemo

Previous High Risk Neuroblastoma treated with High Risk NB SIOPEN

Written informed consent from parents/guardians and patient

Exclusion Criteria

Brain metastasis

Previous high dose therapy

Performance status <70% (Karnofsky or Lansky)

Peanut or Soya allergy

Inflammatory bowel disease

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PI - Dr Esther Blanco
Research Nurses Elise Longworth, Becca Walker, Beckie Weaver 01865 234982
Trials Practitioner Evie Pearson 01865 227747

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PI - Dr Sarah Pratap
Research Nurses Elise Longworth, Becca Walker, Beckie Weaver 01865 234982
Trials Practitioner Evie Pearson 01865 227747

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This information is about a condition called Langerhans Cell Histiocytosis (LCH) in children. About 50 children in the UK develop LCH each year. It can affect children of any age, and is more common in boys than in girls.
LCH is an unusual condition. It has some characteristics of cancer but, unlike almost every other cancer, it may spontaneously resolve in some patients while being life-threatening in others.

There has been some controversy about whether LCH is a cancer but it is classed as such and sometimes requires treatment with chemotherapy. LCH patients are therefore usually treated by children's cancer specialists (paediatric oncologists/haematologists). Most children will recover completely from LCH.

Langerhans refers to Dr Paul Langerhans, who first described the cells in the skin which are similar to the cells found in LCH lesions.

Histiocytosis refers to histiocytes which are cells that are part of the immune system, and are found in many parts of the body.

There are two types of histiocytes:

Macrophage/monocyte cells - these destroy harmful proteins, viruses and bacteria in the body

Dendritic cells - these stimulate the immune system

Langerhans cells are dendritic cells and are normally only found in the skin and major airways. In LCH, the abnormal dendritic cells that look similar to Langerhans cells may be found in different parts of the body, including the bone marrow, skin, lungs, liver, lymph glands, spleen and pituitary gland. When these abnormal dendritic cells accumulate in these tissues, they may cause damage.

LCH is divided into two groups:

Single-system LCH - when the disease affects only one part of the body, for example the skin or the bone

Multi-system LCH - when it affects more than one part of the body

Causes

We don't know what causes LCH but there is research going on all the time to try and find out. We do know that LCH cells carry one of a range of mutations (eg. BRAF V600E, MAP2K) that causes these dendritic cells to act in an abnormal way, causing LCH. It is not yet clear why and how this mutation occurs but this discovery provides us with potential targets for new experimental therapies. These mutations are not present in the cells of the rest of the body and are therefore not passed on in families.
Signs and symptoms
The symptoms of LCH will depend on which part of the body is affected and whether the disease is affecting more than one part of the body. Some common symptoms are:

bone pain

swelling and lumps on the skull

skin rash such as cradle cap or nappy rash

discharge from the ear

hearing problems

enlarged lymph glands

irritability

poor appetite

breathing difficulties

tummy problems such as diarrhoea

liver problems including jaundice

In 10-20% of patients with multi-system disease, the pituitary gland at the base of the brain is affected, causing hormonal problems. This can lead to passing larger amounts of urine and being very thirsty. This is called 'diabetes insipidus', which is different from 'diabetes mellitus' (sugar diabetes) and can be well-controlled with specific medicines. Occasionally, other pituitary hormones may be affected, causing poor growth or delayed puberty, which can also be treated.

How LCH is diagnosed

A variety of tests and investigations may be needed to diagnose LCH. Tests are likely to include the removal of a sample of cells from an affected part of the body (a biopsy). This is usually done in an operation under a general anaesthetic. The cells are then examined under a microscope. X-rays are taken of the bones, skull and lungs. Blood and urine tests will also be done.

Additional scans and tests may be required depending on which parts of your child's body are affected. These tests help the doctors decide whether the disease is a single-system or multi system type.

When your child is having the tests, they may need to stay in hospital. Any tests and investigations that your child needs will be explained to you.

Treatment

Single-system LCH may disappear without any treatment but some patients do require treatment. Surgery, corticosteroids and oral indomethacin are some of the treatments used in single-system LCH.

Surgery, corticosteroids and oral indomethacin are some of the treatments used in single-system LCH. Multi-system LCH (and some single-system LCH) is treated with chemotherapy with or without corticosteroids.

Chemotherapy is anti-cancer medication that can destroy cancer cells, and corticosteroids are hormonal substances that are naturally produced in the body. Both chemotherapy and corticosteroids can help to destroy the LCH cells.

Treatment with drugs inhibiting specific, disease-causing mutations in LCH cells may be considered in a small number of children with high risk disease, who do not respond to standard treatment and those with rare complications. These drugs are known as BRAF inhibitors or MEK or MAPK inhibitors.

Your child's treatment will depend on the type of the disease. Your child's doctor will discuss the treatment options with you.

Clinical trials

Many children have their treatment as part of a clinical research trial. Clinical trials are carried out to try to improve our understanding of the best way to treat an illness, usually by comparing the standard treatment with a new or modified version. Clinical trials mean there are now better results for curing children's cancers compared with just a few years ago.

Your child's medical team will talk to you about taking part in a clinical trial and will answer any questions you have. Taking part in a research trial is completely voluntary, and you'll be given plenty of time to decide if it's right for your child. You may decide not to take part, or you can withdraw from a trial at any stage. You will then receive the best standard treatment available.

National treatment guidelines

Sometimes, clinical trials are not available for your child's tumour. In these cases, your doctors will offer the most appropriate treatment, using guidelines which have been agreed by experts across the UK. Children's Cancer and Leukaemia Group (CCLG) is an important organisation which helps to produce these guidelines.

Follow-up care and monitoring

Once treatment has finished, the doctors will monitor your child closely with regular appointments to be sure that the LCH has not come back and there are no complications.

LCH sometimes comes back and your child may need treatment again. If this happens, treatments for LCH that have worked for them before may be effective again. The same or different treatment may be required.

After some time, your child will not need to visit the clinic so often, but will continue to be monitored for possible permanent consequences of the disease (e.g. a low production of certain hormones, hearing problems) and may need treatment for these conditions.

Months or years later, some children may develop late side effects from the treatment they have had but this is less common with the medicines used for LCH. You can find more information in our life after childhood cancer resources.

Your child's doctor or nurse will talk to you about any possible late side effects and will keep a close eye on possible long-term side effects in follow-up clinics.

If you have specific concerns about your child's condition and treatment, it's best to discuss them with your child's doctor, who knows the situation in detail.

Useful LCH links

Histiocytosis Association
www.histio.org
International partnership of patients, families, physicians and friends, which aims to promote scientific research and education related to histiocytosis.

Histio UK
www.histiouk.org
Dedicated to supporting patients and their families, raising awareness of histiocytic disorders and funding research to find a cure. It also publishes the 'Langerhans Cell Histiocytosis (LCH): A Parent's Guide'.

Reviewed by:

Reviewed by Dr Vasanta Nanduri, Consultant Paediatrician, Oncology and Endocrinology, Watford General Hospital and CCLG member

Content last reviewed: May 2022
Next planned review: May 2025

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This information is about a condition called Langerhans Cell Histiocytosis (LCH) in children. About 50 children in the UK develop LCH each year. It can affect children of any age, and is more common in boys than in girls. LCH is an unusual condition.

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Inclusion Criteria

Primary Wilms tumour

Exclusion Criteria

Patients who do not give consent for inclusion of their clinical/imaging or biological sample data

patients/parents can consent separately to the biological studies so may still be registered if they consent for inclusion of their clinical/imaging data but will be excluded from the biological studies if they so wish

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4mls blood in EDTA

Diagnosis

Mid chemotherapy

Pre & Post nephrectomy/renal sparing surgery

End of treatment

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FFPE tissue from relapse biopsy (frozen tissue not mandatory but recommended)
Blood for germline & circulating DNA
Diagnostic tissue from primary malignancy & all subsequent relapses (FFPE)

Bone marrow from latest relapse/refractory episode
CSF (as above but not mandatory)

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PI - Dr Shaun Wilson
Research Nurses Elise Longworth, Becca Walker, Beckie Weaver 01865 234982
Trials Practitioner Evie Pearson 01865 227747

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Inclusion criteria

Clinical diagnosis of HB and histologically defined diagnosis of HB or HCC.

Histological confirmation of HB is required except in emergency situations

Age ≤30 years

Written informed consent

Exclusion criteria

Any previous chemotherapy or currently receiving anti-cancer agents

Recurrent disease or secondary malignancy

Previously received a solid organ transplant

Uncontrolled infection

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PI - Dr Esther Blanco
Research Nurses Elise Longworth, Becca Walker, Beckie Weaver 01865 234982
Trials Practitioner Evie Pearson 01865 227747

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PI - Karen Sherbourne
Research Nurses Elise Longworth, Becca Walker, Beckie Weaver 01865 234982
Trials Practitioner Evie Pearson 01865 227747
Email - paedhaem.oncresearch@nhs.net

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Inclusion criteria

Age 0-18

A new diagnosis of a childhood cancer

Exclusion criteria

Age at diagnosis over 18

Patient not diagnosed in the UK

Parent/carer or young person unable to give informed consent

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PI - Jennie Moreton
Research Nurses Elise Longworth, Becca Walker, Beccie Wearver 01865 234982
Trials Practitioner Evie Pearson 01865 227747

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PI - Dr Amy Mitchell
Research Nurses Elise Longworth, Becca Walker, Beckie Weaver 01865 234982
Trials Practitioner Evie Pearson 01865 227747

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Inclusion criteria

Age 1-17 years

Enrolled on ALL2Together1

Exclusion criteria

Trisomy 21

Chronic active arthritis

Contra-indication to flouroquinolones

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Study Requirements

Stool sample or peri-rectal swab

Completion of QoL Questionnaire

At baseline, day 15, week 6, start of maintenance and at 12 months

Daily diary for 5 weeks

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Inclusion Criteria

Histologically confirmed diagnosis of medulloblastoma

Age over 3yrs at diagnosis (date of initial surgery)

No prior oncological treatment

Adequate hepatic, renal & haematological function

Exclusion Criteria

Patients with significant residual tumour (> 1.5 cm2) following surgical resection of the primary tumour

Chang Stage M4 disease

Brainstem or embryonal tumours in other sites

Patients previously treated for any type of malignant disease

Medical contraindication to radiotherapy or chemotherapy

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Diagnosis

Snap frozen tissue from initial surgery

FFPE block

Whole blood

CSF

Relapse

Snap frozen tissue

FFPE Block

QoS Questionnaire

Post surgery, pre induction chemotherapy

2yrs post diagnosis

5yr post diagnosis

at age 18

Neurocognitive Assessments

Post surgery or up to 2 weeks into Rx

2yrs post diagnosis

5yr post diagnosis

at age 18

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Key Contact Details
PI - Shaun Wilson
Research Nurses - Elise Longworth, Rebecca Walker & Rebecca Weaver 01865 234982
Trials Practitioner - Evie Pearson 01865 227747
Email - paedhaem.oncresearch@nhs.net

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Inclusion Criteria:

Age >1yr & <21yrs

New diagnosis of ALL with definitive evidence of BCR-ABL-1Fusion, FISH or RT-PCR

Must have already started induction but received less than 14 day of treatment

Diagnostic BMA available

Adequate liver, renal and cardiac function

Exclusion Criteria:

Known CML

ALL as secondary cancer

Down syndrome

Current PHDU/PICU level supportive care

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PI - Dr Neha Bhatnagar
Research Nurses - Elise Longworth, Becca Walker & Beckie Weaver 01865 234982
Trials Practitioner - Evie Pearson 01865 227747

Email - paedhaem.oncresearch@nhs.net

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PI - Dr Amrana Quereshi
Research Nurses - Elise Longworth, Becca Walker & Beckie Weaver 01865 234982
Trials Practitioner - Evie Pearson 01865 227747

Email - paedhaem.oncresearch@nhs.net

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Inclusion criteria

Disease recurrence or progression after completing first line treatment OR refractory disease

Soft tissue disease component evaluable by cross-sectional imaging (RECIST)

Age ≥4 years and <50 years

Exclusion Criteria

Bone marrow infiltration resulting in ANC of <1.0 x10⁹/L or platelets <75 x 10⁹/L.

Cytotoxic chemotherapy or other IMP within previous 2 weeks.

Myeloablative therapy within previous 8 weeks.

Radiotherapy to target lesion within previous 6 weeks.

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Key Contact Details
PI - Shaun Wilson
Research Nurses - Elise Longworth, Rebecca Walker & Rebecca Weaver 01865 234982
Trials Practitioner - Evie Pearson 01865 227747
Email - paedhaem.oncresearch@nhs.net

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Inclusion Criteria

Age <22yrs

Newly diagnosed intracranial or spinal ependymoma

FFPE tissue

Exclusion Criteria

WHO Grade 1 ependymoma

Spinal cord tumour

Co-enrolment in other ependymoma trial

Family Hx of severe epilepsy

Hepatic & renal impairment

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Key Contact Details
PI - Shaun Wilson
Research Nurses - Elise Longworth, Rebecca Walker & Rebecca Weaver 01865 234982
Trials Practitioner - Evie Pearson 01865 227747
Email - paedhaem.oncresearch@nhs.net

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Inclusion Criteria
(R1 RAPID COJEC/GPOH)

Stage M neuroblastoma over 1yr with any MYCN Status

or

Stage L2, M or Ms neuroblastoma with MYCN amplification at any age

No previous chemotherapy (except 1 cycle of Carbo/Etop allowed)

(R-HDC Single HDC Bu-Mel/Tandem HDC Thiotepa + Bu-Mel) randomised at end of induction

over age 1yr Stage M neuroblastoma

Complete or partial response at metastatic sites

Stem cells available

(R-RTx local radiotherapy) treatment allocated after disease evaluation post HDC & surgery

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Vindesine (Eldisine) | Cancer information | Cancer Research UK

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Vindesine is a chemotherapy drug. It is a treatment for many different types of cancer. Find out about how you have it, possible side effects and other important information.

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Given in GPOH randomisation only (not Rapid COJEC) as 3 weeks between cycles.

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PI - Dr Esther Blanco
Research Nurses - Elise Longworth, Becca Walker & Beckie Weaver 01865 234982
Trials Practitioner - Evie Pearson 01865 227747

Email - paedhaem.oncresearch@nhs.net

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20-50% of long term survivors will experience neurotoxicities eg. methotrexate stroke-like symptoms, PRES, problems with memory/attention/processing speeds.

Cogstate Games:

Detection Task (Processing speed)

•Identification Task (Attention/Vigilance)

•One Card Learning Task (Visual Recognition Memory)

•One Back Memory Task (Working Memory

•The Groton Maze Learning Task (Problem Soling, Attention Span, Spatial Memory and Reasoning

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PI - Dr Amy Mitchell
Research Nurses Elise Longworth, Becca Walker, Beckie Weaver 01865 234982
Trials Practitioner Evie Pearson 01865 227747
Email - paedhaem.oncresearch@nhs.net

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Inclusion Criteria

age 4 - 21yrs

Confirmed childhood cancer diagnosis or

First relapse of childhood cancer

Enrolment must occur within 8 weeks of starting anti-cancer treatment

Exclusion Criteria

cancer diagnosis not requiring either chemotherapy, radiotherapy or solely requiring surgery

patient unsuitable after assessment by treating team (medical, psychological reasons etc)

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Research Assisstant - Hayley Marriott 01865 484260 hmarriott@brookes.ac.uk