International Neuroblastoma Research and Collaboration for Effective Delivery (INBRACED) is a new collaboration between charities, researchers and clinicians with the shared aim of accelerating the development of new, more effective therapies for the childhood cancer neuroblastoma.Central to the group’s activities is the introduction of standardised, international clinical trials.
The three founding members of INBRACED are three paediatric cancer charities that focus on neuroblastoma.
It represents the first time three such charities have joined in funding neuroblastoma research on an international, multi-centre scale. INBRACED is constantly seeking new member organisations all over the globe.
The aim of INBRACED is to develop more effective treatments for neuroblastoma through international collaboration. Researchers will test potential treatments with the ultimate goal of developing effective new options for children with high-risk neuroblastoma globally. The first grant to be awarded under the scheme is for nearly $500,000. The development of treatments which promote lasting remission in neuroblastoma is crucial as a large percentage of children with the cancer either do not respond to treatments or suffer dangerous relapses. There are limited treatment options in the most serious cases, and clinical trials often represent the best option to families who have reached the end of typical therapy. 60% of children with cancer now participate in clinical trials as part of their treatment, compared with 5% of adults with cancer.
INBRACED forms partnerships with existing charities and consortia to increase participation and international cooperation in clinical trials.
INBRACED differs from pre-existing groups in that it will fund and manage projects delivered in different centres worldwide. Presently, there is no widely recognised global therapeutic alliance for neuroblastoma. INBRACED partners actively reach out to experts and charities internationally, not only to assist with the sharing of information and cultivation of collaborations, but also to manage joint initiatives across borders .
Although neuroblastoma is a rare cancer, there are a number of statistics which elucidate the severity of the lack of effective therapies. Neuroblastoma accounts for 50% of all tumours developed in the first year of life and has fallen behind the improvements in overall childhood cancer survival rates. There is a drastic need to develop new treatments for neuroblastoma. The aggressive nature of the cancer and its low survival rate are testament to the urgency of better dealing with a cancer from which many never achieve remission, and a significant number of those who do experience often fatal relapses.
The low incidence of the cancer in the population at large is another barrier to clinical trials for new treatments. With so few patients it is very difficult to run studies with a sufficient number of participants and there are further problems sourcing the right level of patients similar enough to ensure validity. Many projects fail to translate promising results in the early phases of research into therapies, often due to a lack funding for drugs specific to neuroblastoma, which would have limited profitability. The INBRC will grant funds to ensure promising initial results are developed and enhanced without the pressure of commercial viability.
We will invite charities, professionals, companies and consortia to join the INBRACED Global Network.
By joining our Global Network members will be agreeing to be part of discussions which aim to avoid duplication and cooperate effectively. Different network members will be engaged to collaborate on the projects most relevant to their particular expertise. All parties will be kept aware of joint projects and given an open forum in which to suggest the most efficient allocation of work packages.
www.inbraced.org was set up as a free resource for parents, clinicians and researchers with an interest in neuroblastoma. The site aims to act as a central source of neuroblastoma news from all over the world and cater to individuals looking for information on all of the different aspects of treatment, research and recovery.
The site uses special software which collects and displays neuroblastoma articles, journal entries and social media posts as they are uploaded to the internet. Curated by the charity partners that form INBRACED and a number of generous collaborators, posts are assessed and vetted for accuracy before reaching the site. This site aims to provide a comprehensive and trustworthy overview of developments in neuroblastoma and help its users avoid long sessions trawling the internet for reliable information.
If you are a member of a family affected by neuroblastoma, a researcher studying neuroblastoma or a clinician treating neuroblastoma this website is built for you. For this reason we welcome any feedback, comments and suggestions for articles we might have missed. Please email JCalvert@ncca-uk.org to help us improve the site.