A cancer diagnosis changes the life of a child and their family in an instant. Along with the medical challenges, many questions, concerns and uncertainties arise. But who better to understand what those affected truly need than the individuals themselves? This is exactly where the SPAB steps in. It brings the voices of patients and their families directly into clinical research. This should make studies even more relevant to everyday life and their results easier for the general public to understand.
SPAB members have firsthand experience: either they or their relatives had cancer at a young age. As experts, they lend their support to our researchers, the staff of the SPOG Coordinating Centre and the Protocol Working Group.
Why is a patient advisory board so important?
Every clinical trial has the long-term goal of developing better treatment options. For SPOG, the members of the SPAB play a pivotal role in this process. Their contributions include:
- Sharing their personal experiences to further improve the feasibility, relevance and credibility of clinical trials.
- Participating in events to raise awareness of SPOG’s role in paediatric cancer research.
- Contributing to the design of new studies to ensure that patients’ needs and priorities are at the centre.
- Evaluating study proposals as active members of the SPOG Protocol Working Group (PWG).
- Collaborating on information materials to ensure comprehensible and accessible communication.
- Representing the patient perspective in SPOG’s decision-making processes.
Who is involved?
On behalf of the SPOG Board of Directors, PD Dr. med. Dr. phil. Raffaele Renella led the establishment of the Patient Advisory Board. SPOG published the call for applications for three to seven members at the end of November 2024. Parents, family members or primary carers of children or adolescents with cancer as well as former patients (survivors) of childhood cancer were eligible to apply.
In January 2025, the SPOG Board elected the first five SPAB members. These are
Paul Castle, Claudio Nicita, Nicole Scobie, Nicole Seiler and Gaëlle Solioz.
“The five founding members bring a wealth of experience, diverse perspectives and varied backgrounds to their new roles,” comments Raffaele Renella on their election. “We are very happy that they are actively involved in the SPAB.”
As a delegate of the SPOG Board, Renella will chair the SPAB together with one of the five members. The SPAB will elect the person in question at the constituent meeting. This will take place on 7 March at the SPOG SSPHO Stakeholder Meeting in Bern.
Do you have any questions about the SPAB or would you like to get involved?
The SPAB can accept up to seven members. If you are interested in participating, please contact us. Dustin Singer, SPAB project manager at the SPOG Coordinating Centre, will be happy to answer any questions you may have.
