FAQs

What is our research strategy?

Background

The incidence of childhood cancer increased through the second half of the twentieth century and continues to increase today.

Incredible progress has been made in treating childhood cancers but the pace of progress has now slowed and a substantial minority of patients are failed by therapy and do not survive.

In addition, the tremendous gains in survival have been achieved through the use of increasingly intensive treatment regimens, putting young patients at risk of adverse, treatment-related effects.

Research aims

  • We want to understand more about why children develop cancer, to find explanations for the increase in risk and to establish whether prevention is a possibility.

  • We want to drive forward the development of novel approaches to diagnosis, identification of markers of likely outcome and improved treatments for childhood cancer in order to tackle those forms which still elude successful treatment and to minimise the risk of adverse, treatment-related effects.

  • We want to understand more about the long-term risks faced by childhood cancer survivors, of whom there are now more than 30,000 in the UK.


Read more: Our full research strategy

How much do we grant on research?

In 2015, we made grants of £4.39 million for research into childhood cancer (2014: £4.04 million).
In 2016, we will spend more than £5 million.

Benign
A benign tumour is not cancerous. It may, however, still cause problems depending on its location.
Biopsy
If doctors suspect that a tumour is cancerous, a surgeon may remove part of it to examine under a microscope. This may either been done by a needle, which is put into the tumour through the skin to remove a sample of cells, or by open biopsy, where a small piece of the tumour is taken during a small operation.

The cells will be sent to a laboratory for examination; the results may take several days.
Bone marrow transplant
Bone marrow transplantation is the term previously used to describe stem cell transplantation – see below.

The new terminology reflects the less invasive method now used to collect stem cells from the donor’s circulating blood rather than their bone marrow.
Central line
A central line is a tube which is used to give chemotherapy. It goes into the chest and directly into one of the major blood vessels. It usually stays in place for the duration of treatment.

The end of the central line protrudes from the chest and is sealed off with a cap.

Having a central line avoids the needs for repeated injections as all intravenous medication can be given through the line. The line can also be used to collect blood samples which are frequently required during treatment.
Chemotherapy
Chemotherapy is the term used to describe the drugs which a child is given to kill the cancer cells.

These drugs may be taken orally (by mouth), intravenously (injected directly into a vein), intramuscularly (injected directly into the muscle) or intrathecally (directly into the spinal fluid via a lumbar puncture).

Clinical trials
A clinical trial is a scientific comparison of one or more treatment options to determine which offers the best outcome. Information gathered from successive trials has been one of the most important factors in the increasing survival rates for childhood cancers.



Taking part in a clinical trial is entirely voluntary and children who do not take part will receive the current standard treatment.
What are the symptoms of leukaemia?
The symptoms of childhood leukaemia are not very specific. They include the following:

•    Frequent, persistent infections
•    Unusual bleeding and bruising
•    Tiredness, paleness and breathlessness

It should be emphasised that leukaemia in children is rare and most children exhibiting these symptoms will NOT have leukaemia.

If you are worried about your child you should see your GP.

Read more: Information on cancer types
How is leukaemia diagnosed?
Because of the non-specific symptoms, leukaemia can be difficult to spot.  But once suspected it can be diagnosed easily by a routine blood test. The blood test will determine whether there are leukaemic cells in the blood.

The diagnosis will be confirmed by taking a bone marrow sample. This will give doctors more information about the type of leukaemia affecting the child, enabling them to determine the best course of treatment.
How common is leukaemia?
Leukaemia is the most common form of cancer in children. Around 450 children are diagnosed with leukaemia every year in the UK.

More than half of these children are under the age of five years.

Read more: Acute lymphoblastic leukaemia  | Acute myeloid leukaemia  | Chronic myeloid leukaemia
What causes leukaemia?
We don’t really know why children develop leukaemia. But we know that the development of leukaemia is a two-stage process.

The first stage (usually) takes places whilst the child is still in the womb. The second stage – and the transformation to full-blown leukaemia – takes place at some later point.

It's thought that one or both of these stages may be triggered by some environmental factor

Read more: The causes of childhood leukaemia
CT (computerized tomography) scan
A CT scan shows up areas of the inside of the body. The CT scanner takes a series of x-rays from different angles. A computer uses the x-rays to build up a 3D picture of the inside of the body. CT scans are painless but the child may be given a sedative or general anaesthetic to make sure that they lie still.
What is a central line?
A central line, also known as a Hickman line, is a tube which is used to give chemotherapy. It goes into the chest and directly into one of the major blood vessels.

The end of the central line protrudes from the chest and is sealed off with a cap. It usually stays in place for the duration of treatment.

Having a central line avoids the needs for repeated injections as all intravenous medication can be given through the line. The line can also be used to collect blood samples which are frequently required during leukaemia treatment.

Read more: Treatment
What is donor lymphocyte infusion (DLI)?
DLI is a treatment used in patients who have relapsed following a stem cell (also known as bone marrow) transplant. The procedure uses lymphocytes (white blood cells) from the same donor to boost the life-saving effects of the original transplant.

Read more: Treatment
What is minimal residual disease?
Every child will have some leukaemia cells remaining in their bone marrow when they achieve remission. This is known as minimal residual disease (MRD)

Read more: Minimal residual disease
What does being "in relapse" mean?
A child is said to be in relapse if the leukaemia returns once they have achieved remission.

Read more: Childhood cancer
Donor lymphocyte infusion (DLI)
DLI is a treatment used in leukaemia patients who have relapsed following a stem cell (also known as bone marrow) transplant. The procedure uses lymphocytes (white blood cells) from the same donor to boost the life-saving effects of the original transplant.
What does being "in remission" mean?
A child is said to have achieved remission when the majority of the leukaemia cells in their bone marrow have been destroyed and their bone marrow can resume normal function. This usually happens within the first few weeks of treatment.

Read more: Childhood cancer
Hickman line
Hickman line is another term for ‘central line’ – see above.
Histology
Histology refers to the microscopic anatomy of cells and tissues. When cells or tissues are taken by biopsy, they are examined under a microscope to aid diagnosis.
Lumbar puncture
Lumbar puncture is a procedure whereby a needle is inserted into the lower part of the spine to take a sample of fluid. The fluid is known as cerebrospinal fluid (CSF) and it can be tested to look for evidence of cancer cells, infection, and raised pressure in the central nervous system. It can also be used to inject chemotherapy into the cerebrospinal fluid, called intra-thecal treatment. This can be done under general anaesthetic in very young children, as they need to lie very still. Teenagers may be able to tolerate the procedure using local anaesthetic to numb the skin."
Malignant
A malignant tumour is cancerous. If a tumour is malignant it grows uncontrollably and can travel to other parts of the body.
Metastases
Metastases (also known as secondary tumours) are tumours that have spread from a first (primary) tumour in another part of the body.
Minimal residual disease
Minimal residual disease (MRD) is the term used to describe the presence of residual cancer cells, when there are so few present that they cannot be detected by routine means.

Tests have been developed that enable doctors to measure MRD, and it has been shown in children with leukaemia that MRD levels are an important predictor of relapse. MRD measurement has now been incorporated as part of the standard treatment regime for children with acute lymphoblastic leukaemia (ALL): children with high levels of MRD are given more intensive treatment to prevent relapse.

Read more: Minimal residual disease
MRI (magnetic resonance imaging) scan
An MRI scan is similar to a CT scan (see above) but uses magnetism instead of x-rays to build up the pictures. The scan is painless but it can be frightening as the machine is very noisy and the child has to lie in a narrow tunnel. The child may be given a sedative or a general anaesthetic to make sure that they lie still. They will also be given earplugs or headphones to wear.
Portacath
A portacath is a small chamber or reservoir that sits under the patient's skin at the end of their central line. Chemotherapy drugs are given by inserting a needle into the chamber. The portacath stays in place for as long as treatment is needed.



The main advantage of a portacath is that it is not visible on the outside of the body. There is no tube coming out of the chest, as there is with a central line. But some people prefer a central line because they don't like having a needle put in each time they need treatment.

It is possible to have the area over the portacath numbed with a local anaesthetic cream before the needle is put in.


PET (positron emission tomography) scan
A PET scan uses low-dose radioactive glucose to measure the activity of cells in different parts of the body. A very small amount of a mildly radioactive substance is injected into a vein, usually in the arm. A scan is taken a couple of hours later. Areas of cancer show up on the scan because they are usually more active than surrounding tissue.

Radiotherapy
Radiotherapy treats cancer by using high-energy rays to destroy the cancer cells in one area of the body, while doing as little harm as possible to healthy cells. The treatment is usually given as a series of short daily sessions over a few weeks.

Radiotherapy is also used in children with leukaemia who require a stem cell (bone marrow) transplant. Radiotherapy is used to destroy their existing bone marrow prior to transplantation.
Remission
A child is said to have achieved remission when there is no evidence of the disease using standard tests. There may still be minimal residual disease present at remission (see minimal residual disease, above), hence the need for further blocks of treatment.

Read more: Treatments for childhood leukaemia
Relapse
A child is said to have relapsed if their cancer returns once they have achieved remission. Treatment options for children who relapse will be determined by a number of factors.
Who can receive research funding?

We award grants to institutions such as universities, medical and scientific research centres, and hospitals.

Only researchers based at institutions in the UK can apply for funding. We fund research overseas only if it is part of a collaboration being led from the UK.

Part of the criteria for the award of a grant is that there is adequate infrastructure to support the proposed work.

Read more: Funding opportunities

Staging of cancer
Staging is a system used to define the size and spread of solid tumours. Knowing the extent of the cancer helps doctors to decide on the best treatment.

Four stages are usually used:

Stage 1: the tumour is small and localized
Stage 2 or 3: the cancer has spread into surrounding structures
Stage 4: the cancer has spread to other parts of the body

If the cancer has spread to distant parts of the body this is known as secondary or metastatic cancer.
Stem cell – or bone marrow – transplant
A stem cell – or bone marrow – transplant allows children to have much higher doses of chemotherapy than they could otherwise tolerate. This improves the chances of curing their cancer but has more side effects.

Very high doses of chemotherapy destroy the blood stem cells in bone marrow, so after high-dose chemotherapy a child will be given stem cells as a drip. These make their way to the bone marrow and start producing blood cells again.

Stem cell transplants can also bring about an important curative effect in leukaemia patients, known as graft versus leukaemia.

Read more: Stem cell transplantation
Surgery
Surgery plays a very important part in the treatment of cancer. Depending on the size and position of the tumour in the body, an operation to remove it may be the first part of treatment.

Sometimes, surgery may be dangerous or cause too much damage because of the size and position of the tumour. In these situations, chemotherapy or radiotherapy may first be used to shrink the tumour.
How do we decide which research to fund?

Our research strategy sets out the key areas of research we have decided we need to focus on.

Grant applications are invited via our different funding streams such as our Brain Tumour Initiative, Fellowhsips etc. These applications are rigorously assessed by members of our Scientific Advisory Panel with the assistance of expert external reviewers from around the world.

AMRC logo - click here to visit AMRC websiteChildren with Cancer UK is a member of the Association of Medical Research Charities (AMRC). The AMRC sets minimum standards of good practice to which member charities must adhere in their grant-making, including policies on peer review.

Visit AMRC website

Read more: Our peer review and assessment processes

Tumour marker
A tumour marker is a substance found in the blood, urine or body tissues that can be elevated in cancer. Tumour markers can be produced directly by the tumour or by non-tumour cells as a response to the presence of a tumour.

Tumour markers can be used to detect tumours via screening programmes for common cancers; they can be used to monitor cancer survivors after treatment by detecting recurrence; and they can be used for diagnosis of specific tumour types, particularly in cases where biopsy is not feasible, such as brain tumours.
Ultrasound scan
An ultrasound scan uses sound waves to build up a picture of the inside of the body. A gel will be spread onto the part of the body being scanned. A small hand-held device, like a microphone, which produces sound waves, is passed over the area. The sound waves are then converted into a picture by a computer.

Ultrasound scans are used particularly to look at the abdomen and heart.
How do we monitor the research that we fund?

We keep in touch with grant-holders during the period of their grant to monitor their progress and keep track of findings.

Under our terms and conditions of funding, all grant-holders must provide annual reports on the progress of their project and a final report at the end of the grant.

We endeavour to visit each project at least once during the course of the grant – to meet the research team, inspect the research facilities and check on the progress of the work.

What happens to the results from research projects?

We place great importance on the dissemination of results, so that those working in the field can learn from other people’s research.

We closely monitor the progress of the projects we fund and encourage scientists to publish the results of their work where possible.

We provide additional funding for researchers to travel to conferences and meetings to present their work and discuss their findings.

We also host conferences and scientific workshops to bring together those engaged in childhood cancer research. In February 2016, we held a specialist workshop on drug delivery in childhood brain tumours; in September 2016 we are hosting our fourth international conference Childhood Cancer 2016, where a number of our grant-holders will present results from their research.

Read more: Workshop on drug delivery in childhood brain tumours

Do we fund research involving animals?

Children with Cancer UK is a member of the Association of Medical Research Charities (AMRC). We support the principle of using animals in research when it is necessary to advance understanding of health and disease and to develop new treatments; we want to find improved treatments that will cure even the hardest-to-treat forms of childhood cancer, causing minimal side effects for the child. This research only takes place where there is no alternative available; projects are only funded by us after rigorous assessment that specifically addresses the proposed use of animals.

All AMRC member charities support this principle, as outlined in this statement:

All research carried out in the UK involving animals is tightly regulated by the Home Office.

Do we fund research using human embryos or stem cells?

We have never funded any research using human embryos.

We have funded some work involving human embryonic stem cells.

References to the use of ‘stem cells’ in our research generally refer to blood stem cells rather than embryonic stem cells.

Proton beam therapy
Proton beam therapy is an advanced form of radiotherapy that uses a precision high-energy beam of particles (protons) to destroy cancer cells.

Because it is so much more precise than conventional radiotherapy, proton beam therapy delivers a high-dose of radiation to the tumour whilst sparing surrounding healthy tissue. This makes it particularly beneficial for children because it reduces the potential for both short-term side effects and long-term impairments. However, the treatment is not a ‘magic bullet’ and further scientific and clinical research is required in order to properly assess its safety and effectiveness in treating different types of cancer.

There are currently no proton beam therapy facilities available in the UK but in cases where doctors believe that a patient will benefit, the NHS will fund treatment abroad, usually in the US.
In the recent high profile case of Ashya King, his doctors did not believe that proton beam therapy would be beneficial.

In 2015 the government pledged to build two NHS proton beam centres, one in London and one in Manchester. These are due to be operational by 2018. In the meantime, a private health company is due to open a centre in Cardiff by December 2016 and two further centres, in London and Northumberland, the following year. These private centres will be available to NHS patients as an alternative to going abroad for treatment.


Why should I make a Will?
If you do not create a Will, the State will decide how best to divide up your assets.
By creating a Will, you can leave your possessions to the people and causes that you care about most.
How can I make my Will?
A Will is a legal document and so for peace of mind we always recommend that you ask a solicitor to draw it up for you.
How much will it cost to make a Will?
The cost will vary depending on the complexity of your Will, but if your requirements are simple, it need not be expensive.
You can also make use of the National Free Wills Network, see further details in the downloadable legacy pack.

How to leave a gift in your Will legacy pack
What should I do before I visit the solicitor?
Make a list of your assets and decide how you would like to divide them up amongst family, friends and charities.
Take a note of any outstanding debts you may have too.
How can I amend my existing Will?
You can easily add a gift to Children with Cancer UK to an existing Will, by using a Codicil. A Codicil is a document that amends, rather than replaces, an existing Will. Download the legacy pack to print off a ready-made Codicil form.

How to leave a gift in your Will legacy pack

We strongly recommend that you consult a solicitor, or the National Free Wills Network, before making a Codicil as this should avoid any legal disputes later.
What if I can’t afford to leave a gift in my Will to charity?
All gifts, large and small, could make a real difference to a child in the future who is suffering from cancer.
With nine children and young people being diagnosed every day in the UK, whatever you can give will be hugely appreciated.
Are there any tax benefits of leaving money to charity?
You may know that inheritance tax applies to any part of your estate that is worth more than £325,000.
Any amount above this value will be taxed at 40%.
If you leave a charitable gift in your Will, it will be taken into account before any inheritance tax is calculated.

Where your money goes

Hover over a segment for details

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