Childhood Leukemia: Overcoming distance between South America and Europe Regions

Informazioni relative al progetto

CLOSER

ID dell’accordo di sovvenzione: 825749

DOI

10.3030/825749

Progetto chiuso

Data della firma CE 10 Dicembre 2018

Data di avvio 1 Gennaio 2019

Data di completamento 31 Marzo 2024

Finanziato da

• SOCIETAL CHALLENGES - Health, demographic change and well-being

Costo totale

€ 3 999 601,25

Contributo UE

€ 3 999 601,25

Coordinato da

HOSPITAL SANT JOAN DE DEU
Spain

Periodic Reporting for period 4 - CLOSER (Childhood Leukemia: Overcoming distance between South America and Europe Regions)

Periodo di rendicontazione: 2023-07-01 al 2024-03-31

Sintesi del contesto e degli obiettivi generali del progetto

Cancer is a major public health problem worldwide, and inequalities in access to cancer control result in differences in patients’ outcomes. Despite improving survival rates in childhood leukemia, there is still a gap in survival between regions, even within well-organized international cooperative groups.
CL care should be addressed globally, considering scientific aspects, technological and human resources, current health policies, and economic, cultural, social, and environmental particularities between countries.
CLOSER aims to harmonize the level of care and reduce inequalities in childhood leukemia in Latin America (LATAM: Argentina, Chile, Uruguay) and European countries (Austria, Czech Republic, Italy, United Kingdom, and Spain), by creating a framework of collaborative and multidisciplinary research. Our team includes physicians, laboratory researchers, patients and families, policymakers, small and medium-sized enterprises, and civil society representatives.
This joint effort will impact childhood leukemia:
From a scientific point of view:
o facilitating a constant exchange of knowledge on the diagnosis and monitoring of childhood leukemia
o providing resources to perform research
o developing innovative solutions to ensure a fast translation from bench to bedside
From a social point of view:
o Empowering patients and families in leukemia care
o Encouraging the participation of civil society
o Promoting educational tools and communication
o Launching a platform to exchange initiatives and experiences in patients’ care

Lavoro eseguito dall’inizio del progetto fino alla fine del periodo coperto dalla relazione e principali risultati finora ottenuti

CLOSER’s global objective was to create a durable, effective, and active collaborative research framework between Latin America and Europe to reduce inequalities in childhood leukemia care.
The project has successfully achieved all the planned objectives. We have mapped the current reality of leukemia care from a scientific and social point of view. We compared the frequency of the leukemia subtypes in Europe and Latin America before and after developing the project. Thanks to CLOSER resources, the number of patients without a precise genetic diagnosis decreased significantly over the years in some centers, meaning that we have improved the diagnosis and the identification of patients with a higher or lower risk of relapse. This information is important to apply more precise, risk-directed treatments.
From a social point of view, CLOSER allowed us to compare the realities of patients, families, and patients’ organizations, mapping their resources, priorities and needs on both sides of the ocean.
CLOSER developed a training program to update laboratory professionals and clinicians on the use of complex and constantly changing methodologies for diagnosing and monitoring leukemia. Relevant guidelines, manuals, and educational material have been developed, together with a free, open online course on Diagnosis of pediatric leukemia integrated with the laboratory.
Also, CLOSER provided resources to investigate rare subtypes of leukemia to determine their prognosis and help optimize the diagnosis according to each partner's resources. Better access to quality control programs allowed partners in Spain and Latin America the opportunity to participate in new international treatment protocols.
CLOSER empowered patients and families by providing them with information on the disease and creating groups of children and teenagers acting as advisors on healthcare.
Overall, CLOSER led to significant advances, which will improve patients’ quality of life and contribute to closing the gap in patient outcomes between Europe and Latin America.

Progressi oltre lo stato dell’arte e potenziale impatto previsto (incluso l’impatto socioeconomico e le implicazioni sociali più ampie del progetto fino ad ora)

CLOSER was an ambitious project with a clear vision: to improve childhood leukemia care from a global, patient-centered perspective, considering medical, scientific, academic, and social aspects. Progress requires a multidisciplinary approach, and it is only possible through collaboration.
Overall, the international CLOSER consortium has proven to be a highly beneficial strategy. Collaboration between European and Latin American countries has led to significant advances, which will improve patient care and survival and reduce the inequalities between both regions.
CLOSER created a stable network of collaboration that has benefited patients, families, patient organizations, doctors, and researchers and will endure after the end of the project.
The list of achievements includes improvements in leukemia diagnosis; increased knowledge about leukemia thanks to new educational materials for patients, families, and healthcare professionals; better organization of laboratories and optimization of resources; implementation of new laboratory techniques; creation of groups of teenagers as advisors in health; participation in new international treatment protocols, and new opportunities for future collaborations in research.
Complex diagnostic methods have been adopted or improved in Latin America and Spain, leading to better identification of leukemia subtypes. The compilation of standardized laboratory procedures and the creation of detailed guidelines have resulted in a more precise leukemia diagnosis. This is very important because it allows the application of risk-directed treatments.
Also, access to national and international quality control programs facilitated the participation of Spanish and Latin American centers in new international therapeutic protocols that will offer the best therapy possible, considering the risk of each patient.
CLOSER also focused on training healthcare professionals. A unique course dedicated to the integrated diagnosis of pediatric leukemia was offered to laboratory professionals and physicians around the world beyond the consortium. In this free, open edition, more than 270 students from 20 countries have registered for the course.
CLOSER believes in empowering patients and families so that they can be active members of the care process and clinical research related to childhood leukemia. Improving information about leukemia is essential for patient engagement in healthcare. CLOSER selected and classified existing educational tools for patients and families and created new practical and meaningful content, which will be available on the project’s website. Moreover, CLOSER created Patient Advisory Groups in CLOSER’s countries to raise the voices of children and adolescents in health decisions and research.
We are confident that our achievements will inspire and help other networks and regions beyond CLOSER, benefiting all children and young leukemia patients.

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