Set up your Standing Order
Share this site
help & information for parents
- Help with money and benefits
- Information about clinical trials
- Lots of information about neuroblastoma
- Talk to other parents and get support
sign up to our mailing list
Boxes with an asterisk * next to them are required items
Neuroblastoma is a childhood cancer. It is the most common cancer diagnosed in the first year of life and accounts for around 15% of cancer deaths in children.
- Approximately 100 new cases of neuroblastoma are diagnosed every year in the UK
- Of these babies and children, around 50 - approximately half - will have high risk disease
- The long term survival rate for high risk neuroblastoma patients remains less than 40%, which is around half the average survival rate for childhood cancers
Neuroblastoma is the commonest 'solid' cancer diagnosed in babies and children.
Neuroblastoma often occurs in the abdomen, usually from the adrenal glands, which are above the kidneys. Other places it may occur are in the back of the abdomen beside the spine, at the back of the chest and the neck.
Neuroblastoma can spread to other parts of the body like the liver, bones and bone marrow, lungs, skin and brain.
Sometimes no symptoms are present at the time of diagnosis, and neuroblastoma is the chance finding in a medical examination of a well baby. The first symptoms of neuroblastoma may be related to the presence of a primary tumour, which depends upon its location. Tumours situated in the abdomen may cause a swollen belly, stomach pain, constipation, or diarrhoea.
A tumour in the chest may cause breathing problems, often similar to a chest infection. A tumour resting on the spinal cord may cause weakness or difficulty walking.
Sometimes neuroblastoma is diagnosed a result of symptoms caused when it has spread to other parts of the body. This is called metastatic disease. These symptoms are often vague and can include fatigue and loss of appetite. Some children experience bone pain, some may have unexplained 'black eyes' or bulging eyes.
Many of these symptoms are simila
r to those of other more common illnesses. Unless a parent or doctor discovers a lump, a diagnosis of neuroblastoma may not be initially considered.
Neuroblastoma may occur at any age. It may be present at birth, or even be diagnosed on a scan during pregnancy. Most patients are of pre-school age, the average age for diagnosis of children affected by neuroblastoma is two years old. Neuroblastoma can also occur in older children and teenagers, or very rarely, in adults.
March 2013 - Neuroblastoma Alliance
UK, J-A-C-K and US-based charity Solving Kids’ Cancer launch
unique international research collaboration to target neuroblastoma research
The international charity collaboration, which also includes other European organisations, is offering up to $500,000 to fund an international collaborative clinical research study focused on immunotherapy strategies for children with neuroblastoma, an aggressive childhood cancer.
The collaboration, named INBRC, the International Neuroblastoma Research Collaborative, will focus on encouraging collaboration and expediency in developing treatments for neuroblastoma. It hopes to deliver near-term benefits to neuroblastoma patients across the globe. The research fund is one of the largest available globally for neuroblastoma and will deliver real benefits to children in the next 18 months.
An article published in The Lancet on 20 February noted that‘Fostering open collaborations with many groups from industry, regulatory bodies, academia, governments, and patient advocacy will be crucial to speeding up drug development’ (quote from co-author Professor Gilles Vassal of Paris-Sud University) and this is exactly what the INBRC aims to achieve.
More than 1,000 oncologists, researchers and specialists from across the globe have been invited to submit proposals, which will then be considered by an expert panel, before the announcement of the award is made in June 2013.Immunotherapy strategies have been chosen as the subject of research, as they currently offer the best chances of cure, as shown by the Children’s Oncology Group (COG) study in the US, which showed an increase in two-year survival rates of 20 percentage points*.
Immunotherapy for cancer has rapidly advanced in recent years and shown success in some adult cancers, but few options are available for immunotherapy for children, especially in Europe. The focus of this initiative is to rapidly advance immunotherapy clinical trials for children, which may provide more potential for curing relapsed neuroblastoma than chemotherapy and radiation approaches.
Funding for Pilot Study
The Neuroblastoma Alliance UK made a grant of £100,000 towards the costs of a 3 year research project which started at the Department of Oncology at University College Hospital, London, in March 2010. Work has concentrated on two different modes and techniques of delivering radiotherapy to patients with neuroblastoma – external beam radiation and molecular radiotherapy.
You can read more about the research project, 'Improving the outcomes for children with neuroblastoma through the optimisation of radiation treatments', by clicking the link. Findings of the work were published The Journal of Nuclear Medicine in July 2011.
Following the success of the pilot study, a three-year Phase II clinical trial is expected to start in the UK in 2012. During the trial, the new radiotherapy treatment will be offered to all UK patients who meet the eligibility criteria - primarily patients who have relapsed neuroblastoma. Although it is a UK-wide trial, the treatment itself will take place at the Royal Marsden and University College Hospital (UCH) in London.
The pilot was carried out by a team of researchers, including Dr Mark Gaze, Consultant Clinical Oncologist at UCH and Great Ormond Street and Dr Jenny Gains, Clinical Research Fellow at UCH . Six children were offered the new radiotherapy treatment, of which five were found to have stable or improved disease following treatment.
Currently the main radiotherapy treatment offered to neuroblastoma patients is a compound called 131I-mIBG. However, this treatment has various limitations as some neuroblastoma cells do not have the receptors which this compound attaches to, so will not be killed by this treatment. Also 131I-mIBG can have serious side effects for neuroblastoma patients as it is toxic to bone marrow, which is already depleted in neuroblastoma patients.
The new treatment uses a compound called 177Lutetium -DOTATATE, or LuDO for short, which attaches to a different receptor that many neuroblastoma cells have on their surface. It is hoped that LuDO will will be as effective in killing neuroblastoma cells as 131I-mIBG, but have fewer and less severe side effects. It is possible that it will be offered in combination with other radiotherapy drugs in the future.
"This pilot study, offers new hope for the families of children affected by the disease," said Dr Gaze. "If the trial proves that the new drug is safe and effective, it may become part of the standard treatment for neuroblastoma patients receiving radiotherapy treatment. It is likely to be offered with other drugs in the future - combining drugs is likely to be more effective as more cells will be killed."
Funding for SIOPEN, supporting UK Neuroblastoma Clinical Research
In November 2011 we made a grant of £15,660 to cover the United Kingdom's annual levy to the European research network that carries out research into neuroblastoma, the International Society of Paediatric Oncology Europe Neuroblastoma Group (SIOPEN). This grant means that UK children will continue to have access to clinical neuroblastoma trials and will also ensure that there is continued maintenance and development of the SIOPEN database, where all data on trials from the 20 European countries involved in the High Risk Neuroblastoma study, is collated and analysed.
Funding for Parent Information Resource
The Alliance has also funded US-based Donna Ludwinski of NB Globe to attend different neuroblastoma events and conferences.
NB Globe reports on published studies, meetings, and clinical trials enrolling patients. You will find objectively written posts thoroughly referenced to authoritative sources, general information relating to paediatric oncology topics, with an overall focus on what is of interest to parents of children with neuroblastoma.
Ultimately, we want to improve the outcome for all children with neuroblastoma.
About a hundred children are diagnosed each year in the UK. The prognosis for babies and children affected by neuroblastoma varies greatly. Unfortunately the largest group fall into the 'high-risk' category where despite intensive treatment, the majority are not cured. The long term survival rate for high risk neuroblastoma children remains less than 40%.
Children with advanced neuroblastoma can receive chemotherapy, surgery, radiation therapy, stem cell transplant, and immunotherapy. Specialists in America and Europe are working together, sharing information and trialling different treatments in different countries.
A range of different treatments using special antibodies are being trialled in Europe—including the UK—and the USA. The criteria for participation in these trials vary to some extent, which is why some children have to travel to America or Germany. In addition, some treatments are not yet available in the UK. The Neuroblastoma Alliance aims to fund their treatment abroad which is why we need your support.