More than 1,600 new cases of cancer are diagnosed each year in children and adolescents in Spain. Personalized medicine is essential to achieve the best outcomes for patients, as it makes it possible to study the characteristics of each tumor and identify alterations that can improve the accuracy of diagnoses and may be susceptible to targeted treatments. In this context, the SEHOP-PENCIL project has laid the foundations for the first national personalized medicine program to facilitate access to the technologies needed to study tumors in all patients regardless of where they live. The work, developed by the Spanish Society of Pediatric Hematology and Oncology (SEHOP), was coordinated by the Childhood Cancer and Blood Disorders group at the Vall d’Hebron Research Institute (VHIR). The effort involved in launching the project is described in a recent publication in the journal JCO Precision Oncology.

SEHOP-PENCIL was launched in 2022 to address existing differences in access to personalized medicine studies in Spain. The team based its work on a survey that analyzed data on where these studies were carried out and what type of technologies were used, and differences were identified depending on the hospital. “When we launched the project, one of the main challenges was to ensure that access to personalized medicine technologies did not depend on where each patient was treated,” explains Andrea Vilaplana, researcher in the Childhood Cancer and Blood Disorders group at VHIR.

To address these inequalities, a coordinated working network was established connecting more than 100 professionals from different disciplines at hospitals and specialized genomic centers across the country. SEHOP-PENCIL is a pioneering initiative in Spain that has been structured as a network of 10 specialized genomic centers coordinated through a centralized patient enrollment system that provides coverage to 45 hospitals. This collaboration has made it possible to share specialized knowledge, coordinate patient enrollment, address complex cases, and harmonize procedures.

As part of the project, joint work has been carried out on the standardization and harmonization of the different sequencing techniques to establish common criteria among the participating centers.

The study of cancer predisposition and collaboration to access targeted therapies

SEHOP-PENCIL has also contributed to coordinating studies of hereditary predisposition to childhood cancer. To this end, the inclusion criteria for predisposition studies have been reviewed to ensure that they are assessed commonly and systematically in participating patients. In addition, work is underway to develop national consensus and clinical guidelines for the diagnosis and management of these patients.

The recently published article also describes the creation of committees of professionals from different disciplines to analyze the results of genomic analysis and discuss the most complex cases. Their implementation makes it possible to share the experience of specialists from different centers and helps ensure that patients have access to targeted therapies and early-phase clinical trials based on the characteristics of their tumor.

The ultimate goal: implementing precision medicine in the National Health System

Although funding for SEHOP-PENCIL has ended, the consortium continues to provide patients with access to genomic studies thanks to the commitment of the professionals and institutions that are part of the project. The ultimate goal is to maintain the activity developed and consolidate the collaborative structure created over these four years. To this end, work is being carried out with regulatory bodies and patient associations, and new funding avenues are being sought to ensure continuity for the activities that have been initiated.

“We have managed to build a very valuable collaborative structure. We are now working to continue this model and consolidate it within the National Health System so that access to these technologies becomes a reality for any pediatric patient with cancer, regardless of where they are treated,” concludes Dr. Lucas Moreno, head of the Pediatric Oncology and Hematology Department at Vall d’Hebron University Hospital and of the Childhood Cancer and Blood Disorders group at VHIR.

More than 900 patients have accessed genomic studies to date

The network established through the SEHOP-PENCIL project has already enabled more than 900 patients to access genomic studies such as tumor sequencing since the project began. The structure created has enabled patients treated at different hospitals to access these technologies, including when these technologies were not available at their referral center. The results are currently being analyzed, and the details will be presented in the coming months.

“The high number of patients who have been able to access these studies demonstrates the reach that a coordinated organization of available resources can have. Above all, we have managed to establish a way of working jointly across different centers and disciplines,” says Dr. Aroa Soriano, principal investigator of the Childhood Cancer and Blood Disorders group at VHIR.

A collaborative project at the national level

SEHOP-PENCIL is a collaborative networking project involving hospitals and research centers working on childhood cancer in Spain. The initiative was developed by SEHOP and funded with 2 million euros by the Carlos III Health Institute, under the Ministry of Science and Innovation, with European funds from the Recovery, Transformation and Resilience Plan.

SEHOP-PENCIL has been coordinated by VHIR and Vall d’Hebron University Hospital and has involved the participation of the Hospital Universitario la Paz Research Institute, the Spanish Society of Pediatric Hematology and Oncology, the La Fe Health Research Institute - La Fe University and Polytechnic Hospital, the Institute of Biomedicine of Seville - Virgen del Rocío University Hospital, the Rare Diseases Research Institute-Carlos III Health Institute, the CRIS AGAINST CANCER Research Foundation, the Niño Jesús University Children's Hospital Research Foundation, Sant Joan de Déu Barcelona Hospital – Sant Joan de Déu Research Institute, the University of Navarra Clinic, the Biobizkaia Health Research Institute and the Castilla-La Mancha Health Service.