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Europe/US collaborative research gets off the ground
Adam’s Hats to fund ground-breaking research
Adam’s Hats teams up with Clic Sargent
Research begins!
Adam’s Hats Short Breaks
Europe/US collaborative research gets off the ground
Following the successful meeting of oncologists initiated by Adam’s Hats in London in April 07, a new Task Group was launched by the Children’s Oncology Group (COG) in the US, and the International Society of Paediatric Oncology Europe neuroblastoma (SIOPEN), at a meeting in Tel Aviv in October.
Profs Andrew Pearson (SIOPEN) and John Maris (COG) debating treatment protocol in Tel Aviv
Photography: Stephen Smith
The goal is to better define the clinical course and biological characteristics that correlate with older children with neuroblastoma, and to ultimately tailor treatment protocols for this rare subset of patients.
The hypothesis is that adolescents and young adults with neuroblastoma have a distinct clinical and biological disease that is difficult to cure and requires novel therapeutic strategies. For this group of patients the Task Group aims to
- Define the clinical and biological characteristics
- Define an age cut-off
- Alternatively, define a tumour genomic profile
- Analyse efficacy of therapies compared with younger patients
- Develop a specific treatment protocol.
Only 3% of all neuroblastoma sufferers are more than 10 years’ old, and the disease kills more children of all ages than any other cancer. Due to extensive research into the conditions surrounding neuroblastoma in infants, survival rates have been significantly improved in the last few years, however the achievement of a complete response to therapy and survival rates for older children remain at almost zero.
The primary purpose of the joint study is to improve by at least 20% the outcomes for patients.
Adam’s Hats is proud and privileged to sponsor this vital ongoing work.
Adam’s Hats to fund ground-breaking research
Adam’s Hats is funding the development of an international consensus for the assessment of MIBG* scans as an indicator of response in high risk neuroblastoma.
High risk neuroblastoma is a major cause of death in children and improvements in treatment remain a major challenge, particularly in the older children/young teenage group where the instances are so few. More therapies are needed.
Two major immediate objectives have been identified to achieve this goal: the development of new induction therapies, and the modification of therapy for those patients who have not responded adequately to current therapy. To progress both, it is mandatory that there is an accurate, robust and reproducible method of assessing the response to treatment. The two methods widely used are the evaluation of bone marrow disease, for which there are internationally agreed protocols, and detection of metastatic disease by MIBG scanning, for which there is no internationally agreed system.
The International Society of Paediatric Oncology Europe Neuorblastoma (SIOPEN) and the Children’s Oncology Group of North America (COG), are collaborating to develop an international consensus scoring system in this vital area. The outcome will be to allow international comparisons to be made of different risk-based therapeutic approaches in the same patient population. The work will also represent a major step forward for international collaborative studies in neuroblastoma.
You are making a real difference towards the improvement of outcomes for patients. We will keep you updated on this important project.
*MIBG Meta-Iodo-Benzyl-Guanidine is the chemical used to treat the same sort of tissue as found in the adrenal glands.
Adam’s Hats teams up with Clic Sargent
Our holiday programme has been so popular that we were becoming overloaded by the administration required to secure the personal service we value so highly for families.
Clic Sargent social workers in cancer treatment centres around the country play an important role in nominating families for the special Adam’s Hats offer, and over the last few months it has become clear that it would be beneficial to form a partnership between us to allow Clic Sargent themselves to administer our scheme. This is now operational, and since 1 August, arrangements are made for families with the Holiday Property Bond, through Clic Sargent offices in Scotland.
Adam’s Hats looks forward to the feedback on this new arrangement in the coming months, which will hopefully lead to more families being able to be accommodated for short breaks in more parts of the UK.
Share in the pleasure of one recent family’s holiday at Sibton Park in Kent, and read the Holiday Property Bond’s own journal article.
Research begins!
One of the principle aims of Adam ’s Hats has been to stimulate research into improving the outcomes for patients in the 10-14 age group – the group that Adam was in. The instances are so few, and the survival rates almost zero for this group of patients, and little of the scant money afforded to children’s cancer research is focussed on this group. However it is accepted that the circumstances surrounding the disease are different. Therapies then need to be different too.
Due to our involvement in the International Society of Paediatric Oncology Europe Neuroblastoma (SIOPEN), we learned of work being carried out by a team at the Children’s Hospital of Philadelphia, under the auspices of the Children’s Oncology Group of North America (COG), which is attempting to understand the full implications of those differences, and what they mean for treatment.
Adam’s Hats instigated a meeting between representatives of SIOPEN from across Europe, and of COG, in London last April, to further collaborative work in this area. As a result, a Joint Task Group has been established to develop the necessary protocols for an internationally-agreed system of data collection and analysis.
The proceedings of this important meeting are available here for you to read. View PDF >
Know that with your help, Adam’s Hats is making a real difference for this under-served group of young people and their families.
Adam’s Hats Short Breaks
Many families have been enjoying short breaks at Sibton Park in Kent, and Langton House on the Isle of Purbeck in Dorset, see Enhance page.
Through our partners at Clic Sargent, we understand that there are few holiday facilities that are appropriate for the special families we serve in Wales. So we are now looking to identify the right Holiday Property Bond facility in Wales, that offers the same combination of easily-accessible accommodation, lots to do for children, peace and tranquillity for adults, alocal cancer treatment centre for emergencies, and support from the local community care team.
We will let you know when we find it!