EPICA-DIPG: a European consortium to test a new strategy for the most aggressive pediatric brain tumor
EPICA-DIPG is a European research consortium led by the Hospital Sant Joan de Déu Barcelona (HSJD) and the Institut de Recerca Sant Joan de Déu (IRSJD) that will investigate an innovative immunotherapy strategy for the treatment of diffuse intrinsic pontine glioma (DIPG).
The role of patient organizations and families
In addition to bringing together leading pediatric oncology centers, research organizations, regulatory experts, health technology assessment specialists and communication partners, the consortium includes patient organizations from the three participating countries:
- Pulseras Candela, Spain
- Fondazione Il Coraggio dei Bambini, Italy
- Vereniging Kinderkanker Nederland, the Netherlands
Their involvement aims to incorporate the perspectives and experiences of patients, families, and caregivers throughout the study. Patient organizations will contribute to the design, review and ongoing evaluation of the clinical protocol and materials for patients, helping to ensure that the study is understandable, ethically sound and sensitive to the lived experiences of patients and their families.
As Nieves Tejeda, Head of Fundraising at Pulseras Candela, explains: “Their experience must shape how the trial is designed, how participation is explained, and how the project communicates what the study can (and cannot) demonstrate.”
A pioneering treatment built around collaboration
Over the next five years, the project will work across three interconnected areas:
It will conduct a multinational phase I clinical trial to evaluate the safety of a combinatorial immunotherapy that has never been tested in humans in this way before. The trial will include patients from three centers in three different countries:
- El Pediatric Cancer Center Barcelona (PCCB) at HSJD, Spain.
- El Hospital Bambino Gesù, Italy.
- El Centro Princesa Máxima, the Netherlands.
It will develop and evaluate a complementary diagnostic approach for minimally invasive, real-time monitoring of immune response, treatment response, and disease burden throughout the trial. This may help researchers understand whether immune changes happen after treatment and how the tumor may be responding.
- It will test an accessible manufacturing model for the production and delivery of advanced therapies across different countries. Under this model, treatments will be manufactured centrally at specialized academic GMP facilities and then distributed to the centers where patients are enrolled and treated.
“EPICA-DIPG does not just ask whether a new treatment strategy can be tested, but whether the entire pathway surrounding that strategy could be expanded,” explains Andrés Morales, Clinical Director of the PCCB and researcher in the Pediatric Cancer Treatment Research Group at IRSJD.
This way, EPICA-DIPG goes beyond studying a new therapeutic strategy alone. The trial will provide a framework for evaluating diagnosis, treatment, and the manufacturing and logistics model across different centers.
What is DIPG?
Diffuse intrinsic pontine glioma is the most frequent pediatric brainstem tumor and one of the deadliest forms of childhood cancer. It most commonly affects children between the ages of 5 and 10.
The tumor develops in a region of the brainstem involved in essential functions such as movement, breathing, and swallowing. It grows rapidly and spreads diffusely through healthy brain tissue, making surgical removal impossible.
Currently, focal radiotherapy remains the main treatment, whilst conventional cancer treatments have proved ineffective. Although radiotherapy can help temporarily relieve symptoms, it is not curative.
The prognosis remains very poor: fewer than 10% of patients survive for two years after diagnosis, and fewer than 1% survive for five years.
