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Why join CCI?

CCI (formerly ICCCPO) works to build a world-wide community of childhood cancer organizations representing families of children with cancer and childhood cancer survivor groups. We share information and experience in order to improve access to the best possible treatment and care for children with cancer everywhere in the world. Complete the form to learn more.

EU projects

CCI (formerly ICCCPO) is partner in a number of EU funded projects. The involvement of parents and patient representatives within such projects is very important for the European Union. CCI is the only officially representation of parents and survivors organisations internationally/Europe.

Here you find the list of ongoing and finished projects, where CCI is/was involved:

encca_logoENCCA

ENCCA (European Network for Cancer research in Children and Adolescents) is a Network of Excellence funded by the European Union`s 7th Framework Programme (FP7) under the Health topic “Structuring clinical research in paediatric and adolescent oncology in Europe”. It is a four year project, funded from 2011-2014.
The mission of ENCCA is to efficiently structure and enhance collaboration within the field of paediatric oncology in Europe through the creation of a `European Virtual Institute´. To achieve this, ENCCA will limit knowledge fragmentation and improve communication channels, incorporating all stakeholders, including parent and patient groups.

Role of CCI:

CCI is a partner in this project via CCI member organisation from Austria (Österreichische Kinder-Krebs-Hilfe).

CCI is involved in six work packages (WP):

  • European sustainable strategy for clinical trial paediatric oncology (WP 2)
  • Clinical trial facilitation (WP 4)
  • Survivorship passport (WP 13)
  • Dissemination activities (WP 14)
  • Education and training (WP 15): In the centre of attention are the improvement of information for parents and patients, creation of a clinical trial brochure and to work on a training programme about clinical trials for parents and patient representatives.
  • Ethical aspects of clinical trials (WP 18): This WP aims to establish general ethical guidelines for clinical trials supported by views of parents and patients. CCI works in this WP very closely with the Institute Curie (Paris), especially the philosopher Jean-Claude Dupont.

Parent and Patient Advocacy Committee (PPAC):

An important milestone within the ENCCA project was the establishment of a Parent and Patients Advocacy Committee (PPAC), which works closely with ENCCA in the design and implementation of its cooperative group on clinical research strategy and access to clinical trials for patients. The PPAC aims:

  • to assist in the development of clinical trials for better prevention and cure of childhood cancer while responding to the medical, social and personal effects of cancer treatment.
  • Seeks to continually improve diagnostics, treatment and follow-up care of paediatric cancer patients.
  • To enhance communication between the families and research community professionals and to increase understanding for the needs of childhood cancer patients, their families and the research community.

The current composition of the PPAC can be seen here.

More information under www.encca.eu or download ENCCA handout


PanCareSurFuplogo-pancaresurfup-yellow

Pancare childhood and adolescent cancer Survivor care and Follow-up studies is an EU funded project with 16 Partners from 11 European countries, which started in Feb. 2011 and will be finished in 2016.

Major aims:
  • to carry out research studies into late effects of treatment for cancer
  • to establish guidelines for long-term follow-up (in conjunction with ENCCA’s Survivorship passport)
  • to disseminate the results and provide training and workshops for stakeholders
  • to provide every European childhood cancer survivor with better access to care and better long-term health.
Role of CCI:

CCI is a collaborative partner in this project, involved in dissemination and public awareness as well as design of the guidelines.

Find more information under www.pancaresurfup.eu, “Life after cancer: More information needed” or download PanCareSurFup handout.


GAPP

GAPPThe GAbapentin in Paediatric Pain (GAPP) project is financed under the 7th Framework Program for Research and Technological Development of the European Union. An international scientific Consortium with 15 Partners from 9 European countries is set up, with experienced professionals in the field of pain that will work together with a Pharmaceutical Company. The project lasts from 2013 till 2017. Chronic pain affects children with varying illnesses, also including cancer. Due to the paucity of clinical information and appropriate medicinal products, paediatric patients are often under-treated.

Major aims

The GAPP Project is focused on the development of gabapentin for the treatment of paediatric chronic pain, a condition where gabapentin, as demonstrated in adults, is expected to bring great benefit to children. Within GAPP, age-appropriate formulation will be developed and two randomized, comparator-controlled clinical trials and a bridging study will be conducted in order to investigate appropriate dosages, efficacy and safety of gabapentin in paediatric population. Further to this, in order to ensure the safety of gabapentin in very young children, a non clinical study will be conducted to evaluate the neurotoxic potential of the drug. At the end of the project, gabapentin can be proposed for the treatment of chronic pain in children both as monotherapy and as adjuvant therapy.

Role of CCI:

CCI is a partner in this project. CCI is in the work packages WP2 Scientific Coordination, WP7 Efficacy and safety trial with gabapentin in moderate pain, WP8 Efficacy and safety trial with gabapentin in severe pain, WP10 Dissemination and knowledge management.

Find more information about GAPP www.pediatricpain.eu

Download press release

Download GAPP handout


ExPO-r-Netexpo-r-net

ExPo-r-Net, the European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment, is a European project that involves a consortium of 18 main partners (and more than 60 collaborating partners). It started in March 2014 and will be finished in February 2017.

Funded by DG SANCO, ExPO-r-Net has been created in response to a European Commission call on pilot networks of cooperation, which referred to the SIOPE-led Standards of Care for Children with Cancer.

Major aims:

The overall aim of the project is indeed to reduce the current inequalities in survival by improving the quality of the current healthcare provided across Europe, and the project will in particular address European countries with lower healthcare capabilities.

  • ExPO-r-Net aims to achieve a high-quality, accessible and cost-effective healthcare for childhood cancer patients in Europe.#
  • The project will link pre-existing reference centres of excellence, seeking mechanisms to facilitate movement of information and knowledge rather than patients (through information and communication technology tools and e-Health).
  • It will result in a better access to high-quality healthcare for children whose conditions require specialised expertise in a Member State other than the Member State of affiliation (where this is not available due to low case volumes and lack of local resources).
  • It will be crucial to collaborate with pre-existing structures is essential, and ExPO-r-Net will therefore support the already existing initiatives initiated by other EU-funded projects like ENCCA, PanCareSurFup, IntReALL and EPAAC.
Role of CCI:

CCI is a partner in this project via CCI member organisation from Austria (Österreichische Kinder-Krebs-Hilfe).

Find more information under http://www.siope.eu/activities/eu-projects/expor-net/ or download ExPO-r-Net handout


PanCareLIFEpcl_logo_final_large

PanCareLIFE is an EU funded project with 15 Partners from 8 European countries, which started in November 2013 and will be finished in 2018.

Major aims:

The goal of PanCareLIFE is that survivors of cancer diagnosed before age 25 should enjoy the same quality of life and opportunities as their peers who have not had cancer. Using observational studies and molecular genetic investigations PanCareLIFE will investigate late effects that impact fertility and hearing impairment (ototoxicity), and will assess health-related quality of life. Information from PanCareLIFE’s studies will be incorporated into new guidelines for fertility preservation.

Role of CCI:

CCI is a collaborative partner in this project, involved in dissemination and public awareness.

Additional information:

IntReALLintreall

IntReALL (International study for treatment of childhood Relapsed ALL) 2010 organizes the worldwide largest international clinical trial on relapsed childhood ALL, aiming for the best standard treatment strategies by investigating innovative therapies, establishing standardized high quality diagnostics and a comprehensive research program on refractory ALL. Up to 300 European hospitals are integrated as well as innovative small and medium-sized enterprises (SME’s) covering biotechnology and IT. The project is closely linked to the relevant networks in paediatric oncology, drug development and to parent organizations. Among this 23 partners ICCCPO as a parent group is involved in this EU funded project (Oct 2011 – 2016).

Role of CCI:
  • Looking at informed consent forms
  • Ethical questions (protocol design, bio-banking)
  • Forming of ethical committee to monitor the progress of the study

More information under http://www.intreall-fp7.eu/ or download IntReAll handout


EPOCepoclogo

The European Paediatric Oncology Off-patent medicines Consortium studies the pharmacokinetics of doxorubicin, a key component of a number of regiments used in the treatment of paediatric cancers, but not yet licenced for the use in children. At present, 21 centres in 4 countries (6 UK, 3 Italy, 6 Germany, 6 France) across Europe are involved.

A better knowledge of the pharmacokinetics of doxorubicin in children is needed to give more precise dose recommendations for different age groups in order to reduce toxicity while maintaining efficacy. The EPOC project aims to provide these important data. The project is supported by the European Union FP7 initiative (finished by the end of 2013).

Primary Objectives:
  • age-dependency in pharmacokinetics of doxorubicin in paediatric patients with solid tumours and leukaemia
  • Patients on standard protocols (including doxorubicin) are tested at different times throughout the treatment
  • Is there a difference in the doxorubicin clearance between children < 3 years and children 3 to < 18 years?
Role of CCI:

CCI is a partner in this project, involved in monitoring of the study design, ethical aspects and dissemination.

More information under http://research.ncl.ac.uk/epoc/ or “Safer medicine for children” and “Testing doxorubicin in paediatric oncology patients


CHILDHOPEChildhope_Logo

The CHILDHOPE project built on the excellence of a network of EU-based partners with a broad experience in the field of pediatric hematology and oncology, immunology and cell & gene therapies. It was an FP 6 funded project, which went from 2006 to 2010. The aim of CHILDHOPE project was to develop a safe and efficient adoptive immuno-therapy for children with advanced or refractory malignancies.

Leukaemia’s are the most common cancers affecting children while malignant lymphomas – including non-Hodgkin lymphomas (NHL) – comes in third position after brain tumours. A significant number of children with leukaemia/lymphomas still fail current therapies. The CHILDHOPE project is a new approach in paediatric cancer treatment since it brings from bench to bedside (and back) an innovative technology as yet never applied in children with advanced or refractory haematopoietic malignancies. Based on biological material obtained from our preclinical models and from children treated with these genetically engineered T-cells, dissecting the interface between the host’s tumour and immune cells and use this knowledge to understand the mechanisms of anti-tumour action, validate novel targets and diagnostic tools specific to children affected with leukaemia or lymphomas
It is a novel approach and urgently needed for ALL patients relapsing after transplant and potentially has a broader applicability.  Patients with highest risk of relapse can be identified.  The genetic manipulation generates powerful anti leukaemia cells. GVHD can be avoided by using virus-specific T cells Efficacy of T-cell therapy is increased by integrated strategy.

Role of CCI:

CCI was full partner in this project, with a focus the study design, ethical aspects and dissemination.

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