CCI is the largest patient support organization for childhood cancer. It is a global, parent-driven non-profit association that represents 181 parent organizations, childhood cancer survivor associations, childhood cancer support groups, and cancer societies, in 90 countries, across 5 continents.

Representatives from European parent- and survivors- organisations as well as professionals from 24 European countries attended the event. In the context of the conference an introduction round on “CCI work & EU projects overview” has been organised on Friday 22nd of April 2016, where Patty Brouwer (CCI) presented the GAPP Project to this wide and receptive audience. After providing a general overview of the GAPP project, she explained the CCI role in the project explaining that: ”These trials will include many oncology patients. For their parents pain is one of the most concerning and frightening aspects of the journey. CCI wants to ensure that children receive the best possible care (pain treatment) wherever they are in the world at the time of diagnosis and beyond”.

She further presented the patient information material for both GABA-1 and GABA-2 trials composed of:

• 3 booklets for 3 age groups aimed to help children to decide in participation
• Video aimed to provide an explanation of trials in general
• Patient diary to be used by children and parents at home to record pain scores

She underlined that the information booklets have been reviewed by children in focus groups in Italy at the children’s hospital of Padova and in The Netherlands at the pain department Rotterdam and at VOKK (Vereniging Ouders, Kinderen en Kanker) patients association.

Here you can see the GAPP presentation entitled “Pain treatment in children. GAbapentin in Paediatric Pain (GAPP)”.

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The teaser video describes the scope and objectives of the project through the voice of scientists, patients and patient families, focusing on the prospects for an enhancement of the patients’ quality of life.

It includes touching moments resulting from the personal and direct experiences of children affected by chronic pain, who were interviewed last December in Athens with the collaboration of AGIA SOPHIA, reporting their situation, describing how their diseases are affecting their daily life and how they live with their pain.

The GAPP Project has entered in their homes and in their private lives, and it has given us the possibility to understand how we can really support them and how clinical studies can definitely help in finding a suitable cure.

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