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Childhood Leukemia: Overcoming distance between South America and Europe Regions

Periodic Reporting for period 2 - CLOSER (Childhood Leukemia: Overcoming distance between South America and Europe Regions)

Reporting period: 2020-07-01 to 2021-12-31

Cancer is a major public health problem worldwide, and inequalities in access to cancer control result in differences in patients’ outcomes. Despite the improvement of survival rates in childhood leukemia last years, there is still a gap in survival between regions, even within well-organized international cooperative groups. Childhood leukemia care should be addressed from a global point of view, considering not only scientific aspects, the amount of technological and human resources, and the current health policies, but also economic, cultural, social, and environmental particularities between countries.
CLOSER aims to harmonize the level of care and reduce inequalities in childhood leukemia in CELAC (Argentina, Chile, Uruguay) and European countries (Austria, Czech Republic, Italy, United Kingdom, 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 joined effort will impact childhood leukemia in different ways.
From a scientific point of view:
o facilitating a constant exchange of knowledge about the diagnosis and monitoring of childhood leukemia
o providing resources to perform research
o developing innovative solutions to assure 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
Despite the difficulties found in a globally affected pandemic world, CLOSER has kept working towards its objectives.
Scientific results:
The research framework within the CLOSER consortium is effective and extremely productive. Fruitful initiatives have been raised and now the bonds between Europe and Latin America in this project are solid. We gathered data from all members to map the current reality in leukemia diagnosis and follow-up in the European and Latin American countries participating in CLOSER. We provided reports with a good overview of the existing inequalities of the detection rate of specific genetic subtypes of leukemia, the monitoring of the measurable residual disease (MRD), and the different methodologies used.
To improve the accuracy of the diagnosis and facilitate the training in complex methodologies, we created different Working Groups to provide clear definitions and discuss complex clinical cases. These efforts produced two comprehensive guidelines on the diagnosis (Provision of guidelines for the standardized identification and delineation of the clinically most relevant diagnostic parameters) and monitoring (Guidelines for the standardized MRD assessment in the clinically most relevant subtypes in childhood acute leukemia) of childhood leukemia. The Flow Cytometry Working Group developed a Quality Control/Quality Assurance intercontinental program on immunophenotypic MRD detection, which improved the levels of concordance among the participants. A report summarizing its achievements was recently reported as an article in a high-impact journal.
We have been collecting the information needed to perform valuable analysis on the prognostic impact of genetic and phenotypic subtypes of leukemia in Europe and Latin America. These studies will be initiated once we deeply characterize all the biologically non-classified samples from the participant centers, including some in vitro studies to know the response of high-risk patients to a specific combination of drugs.
Besides the educational material created and compiled by the project, a training program has been developed since the start of the project. According to the needs and offers of the partners, a Twinning program was established, and in 2019 both intracontinental and intercontinental stays were performed. The COVID-19 pandemics precluded some of the onsite training, but we adapted and performed online training whenever possible.
An online course on Integrated Diagnosis of Pediatric Leukemia with the Laboratory has been designed. It is unique, as there is no similar course anywhere else. Designed in English and Spanish to widen its impact it is offered free of charge to facilitate access to anyone interested.
Social results:
We are disseminating CLOSER messages to the whole society: all children and teenagers have the right to access the best possible treatment, and to enjoy the same opportunities for healing, considering their physical and emotional needs.
Our website includes a new section for families, answering some questions about the project. We also provide useful information on childhood leukemia: inspiring stories with testimonies of patients, families, and carers, myths to banish and a section with links to useful resources (in progress). Moreover, CLOSER is on Instagram, Facebook, LinkedIn, and YouTube channels.
To empower patients and families in Latin American regions, CLOSER raised data on the existing childhood and adolescent cancer Organizations in Latin America and Europe. A survey has been launched to know the needs of patients, families, support organizations, doctors, and researchers in the different countries of the Consortium. A list of existing educational materials was made, and we are classifying and analyzing this material for patients and families. Webinars related to Kids Impacting Disease and Science (KIDS) group activities have been performed. We will analyze the different ways to include these groups in CLOSER sites, considering the settings and interests of each partner.
A “Country Guide” has been written to identify non-health-related attributes that may contribute to characterizing risk patient subgroups and to provide recommendations to adapt clinical and supportive activities in CLOSER participating countries (Argentina, Chile, and Uruguay).
From a practical point of view, CLOSER has started to tackle some of the current unmet needs in childhood leukemia care, going beyond state of the art:
• CLOSER has created a report on the country-specific frequencies of genetic subtypes of pediatric leukemia, providing a good overview of the existing inequalities of the detection rate of specific genetic subtypes. This information will serve as the basis for further analysis of the causes of inequalities.
• CLOSER has created different working groups and specific guidelines on diagnosis and monitoring of childhood leukemia have been produced. Also, a training work plan has been developed, including a twinning program with online and onsite training between partners and an online course on the integrated diagnosis of pediatric leukemia. The twinning program has allowed the trainees to learn and improve their skills in specific methodologies, prioritizing those methodologies that will be needed for the next clinical trials.
• CLOSER has facilitated the exchange of experience and resources to support patients and families and empower them in leukemia research, fostering their active role in leukemia care. CLOSER has started to disseminate the message that research is essential to improve leukemia care. The new area in the CLOSER website for patients and families will allow more direct interaction with families and will provide them with useful material and resources about the project, leukemia, and research.
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