Battling paediatric cancers

PROFILE

 

clinical trial patientSIOP Europe (SIOPE) has existed since 1988 as a branch of the International Society of Paediatric Oncology (SIOP), but it was not until late 2007 that an administrative and scientific support structure was created. “SIOP was created in 1967 by a small number of doctors working around the world to treat children with cancer. Initially it was very much a European-based society, in terms of where most of its members were based, but SIOP has always had a global agenda to improve treatment and outcomes for children with cancer,” says Edel Fitzgerald, SIOP Europe’s Membership and Public Affairs Administrator.

 
SIOP Europe was created to serve the growing challenges faced by European paediatric oncology professionals. While SIOP addressed the global issues facing paediatric oncology, there was a need to structure the interaction between European paediatric oncology clinical trial groups, particularly as the groups faced common regulatory and bureaucratic obstacles from the EU’s Clinical Trials Directive. “There was also no pan-European linkage between rare paediatric cancer patients and professionals, and it was apparent that such a rare disease needed a central ‘one-stop shop’ both for those affected by, and treating, the disease,” recalls Ms Fitzgerald.
 
Despite its rarity and the major advances in treatment and supportive care, cancer is still the leading cause of death from disease in children younger than 15 years old. The types of cancers that occur in children vary greatly from those seen in adults. The most common cancers of children are leukaemia, brain and other nervous system tumours, lymphomas (lymph tissue cancers), bone cancers, soft tissue sarcomas, kidney cancers, and eye cancers. In contrast, skin, prostate, breast, lung, and colorectal cancers are the most common in adults.
 
SIOPE logoSIOPE, a member of EURORDIS, spends a lot of time and energy promoting European-wide clinical trials programmes to evaluate new therapies. “For the treatment of childhood cancer, clinical trials are vital and highly effective: this is clearly reflected in the progress made in survival rates, with approximately 75% of children newly diagnosed expecting to have long-term survival. For most childhood cancers, large numbers of participants are needed for recruitment into randomised trials, and therefore it is clear that multinational interaction is imperative. SIOPE thus provides the latest in clinical trial information to our paediatric oncology network and facilitates a common platform for trial design, best practice guidelines and Good Clinical Practice (GCP) advice for the specific needs of paediatric cancer,” explains Edel Fitzgerald. “I think the initial shock when a parent is informed that their child has cancer is very difficult. Parents are naturally desperate to find a cure and try to decipher what exactly the disease is, but being told their child should enter a clinical trial is truly frightening. Doctors and nurses have the important task of explaining to parents that a trial does not mean their child is being ‘experimented on’ but in fact is being offered the best known treatment.”
 
Promoting education and training initiatives is another key facet of SIOPE. “The Education and Training Committee, spearheaded by Prof. Riccardi, is committed to increasing educational cooperation in Europe and we work closely with numerous organisations in this regard. SIOPE also offers fellowships to young oncologists interested in paediatric cancer and actively encourages those from central and eastern European countries to participate,” details Ms Fitzgerald.
 
helping handSIOP Europe is now a growing force to raise awareness of the needs of children with cancer with policy-makers at national and EU level and to assist health professionals in the field, as well as families of children with cancer, to achieve the best possible treatments and outcomes. “As we are a relatively new organisation, our objective to date has been to bridge the gap between young cancer patients and their parents with both professionals and policy-makers across Europe; therefore we have been keen to connect with European paediatric cancer patient organisations. The next step is to enhance our linkages with other rare disease associations in order to promote better policies for patients with rare diseases, and to raise awareness of the significant challenges facing similar associations. We are already active in a number of rare disease initiatives, including RARECARE and EURORDIS’ Project on Preferred Policy Scenarios - POLKA, amongst others.”

 

 

Author: Nathacha Appanah
Photo credits: © SIOPE &  istock

Page created: 21/01/2010
Page last updated: 06/08/2013
 
 
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