Periodic Reporting for period 3 - CLOSER (Childhood Leukemia: Overcoming distance between South America and Europe Regions)
Période du rapport: 2022-01-01 au 2023-06-30
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 in recent 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, technological and human resources, and 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 Latin America (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
Childhood leukemia care should be addressed from a global point of view, considering not only scientific aspects, technological and human resources, and 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 Latin America (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
The CLOSER consortium has been working steadily towards the achievement of all planned objectives. CLOSER created a stable, sustainable, and productive framework of collaborative research on childhood leukemia to reduce the inequalities between regions. Fruitful initiatives have been raised and now the bonds between Europe and Latin America in this project are solid. CLOSER has yielded important results, both in scientific and social aspects.
1) We first mapped the reality of leukemia care in the CLOSER setting from different perspectives:
1.1. The diagnosis and monitoring of leukemia
2.1. The opinion and current role of patients, families, and patients’ organizations
3.1. The transition to adult hospital
4.1. The needs and resources of patients, families, survivors, patients’ organizations, doctors, and researchers
CLOSER provided accurate reports with a good overview of the existing inequalities in both regions in all aspects.
2) We applied CLOSER resources to reduce the inequalities:
a) An intensive plan of training in complex diagnostic and monitoring methodologies was set up. Different Working Groups provided clear definitions and discussed complex cases. These efforts produced three comprehensive guidelines on the diagnosis of main and rare leukemic subtypes and monitoring. CLOSER compiled the Standard Operating Procedures of each methodology from each partner to compare them and provide experts’ recommendations. These documents will help to harmonize and improve the diagnosis and follow-up of childhood leukemia.
b) An e-learning Course on “Diagnosis of pediatric leukemia integrated with the laboratory” has been created. 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. This course provides an important opportunity to extend CLOSER’s benefits beyond the consortium.
c) CLOSER facilitated access to Quality Control/Quality Assurance (QC/QA) programs for the most complex methodologies. As an example, the Flow Cytometry Working Group developed a QC/QA intercontinental program on immunophenotypic measurable residual disease (MRD) detection, which improved the levels of concordance among the participants.
d) The resources provided by CLOSER allowed the implementation of new methods (Multiplex Ligation Probe Amplification, Fluorescence in situ Hybridization, Next-Generation Sequencing, monitoring of the immunoreceptors IG/TR to follow MRD). These techniques are included in the new international therapeutic protocols and help identify more precisely the leukemic subtype and refine the risk stratification of patients. The improvement in diagnosis will allow the application of more directed and less toxic treatments.
e) CLOSER will analyze the prognosis of different subtypes of leukemia in the European and Latin American regions. In vitro studies testing the sensitivity to a selection of drugs in high-risk patients will be presented.
f) We keep disseminating CLOSER messages from our website (https://closerleukemia.eu/) and our social media channels (Instagram, Twitter, LinkedIn, YouTube) 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.
g) To empower patients and families, our website includes a section for families, providing meaningful and useful educational tools for patients and families. It includes selected existing material and new material created by CLOSER patient organizations.
h) To foster the role of teenagers in the transition to adult hospitals and the leukemia care process, each CLOSER partner in Spain and Latin America has created a KIDS group (for Kids Impacting Disease through Science).
i) A “Country Guide” was 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 countries (Argentina, Chile, and Uruguay).
1) We first mapped the reality of leukemia care in the CLOSER setting from different perspectives:
1.1. The diagnosis and monitoring of leukemia
2.1. The opinion and current role of patients, families, and patients’ organizations
3.1. The transition to adult hospital
4.1. The needs and resources of patients, families, survivors, patients’ organizations, doctors, and researchers
CLOSER provided accurate reports with a good overview of the existing inequalities in both regions in all aspects.
2) We applied CLOSER resources to reduce the inequalities:
a) An intensive plan of training in complex diagnostic and monitoring methodologies was set up. Different Working Groups provided clear definitions and discussed complex cases. These efforts produced three comprehensive guidelines on the diagnosis of main and rare leukemic subtypes and monitoring. CLOSER compiled the Standard Operating Procedures of each methodology from each partner to compare them and provide experts’ recommendations. These documents will help to harmonize and improve the diagnosis and follow-up of childhood leukemia.
b) An e-learning Course on “Diagnosis of pediatric leukemia integrated with the laboratory” has been created. 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. This course provides an important opportunity to extend CLOSER’s benefits beyond the consortium.
c) CLOSER facilitated access to Quality Control/Quality Assurance (QC/QA) programs for the most complex methodologies. As an example, the Flow Cytometry Working Group developed a QC/QA intercontinental program on immunophenotypic measurable residual disease (MRD) detection, which improved the levels of concordance among the participants.
d) The resources provided by CLOSER allowed the implementation of new methods (Multiplex Ligation Probe Amplification, Fluorescence in situ Hybridization, Next-Generation Sequencing, monitoring of the immunoreceptors IG/TR to follow MRD). These techniques are included in the new international therapeutic protocols and help identify more precisely the leukemic subtype and refine the risk stratification of patients. The improvement in diagnosis will allow the application of more directed and less toxic treatments.
e) CLOSER will analyze the prognosis of different subtypes of leukemia in the European and Latin American regions. In vitro studies testing the sensitivity to a selection of drugs in high-risk patients will be presented.
f) We keep disseminating CLOSER messages from our website (https://closerleukemia.eu/) and our social media channels (Instagram, Twitter, LinkedIn, YouTube) 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.
g) To empower patients and families, our website includes a section for families, providing meaningful and useful educational tools for patients and families. It includes selected existing material and new material created by CLOSER patient organizations.
h) To foster the role of teenagers in the transition to adult hospitals and the leukemia care process, each CLOSER partner in Spain and Latin America has created a KIDS group (for Kids Impacting Disease through Science).
i) A “Country Guide” was 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 countries (Argentina, Chile, and Uruguay).
CLOSER tackles some of the current unmet needs in childhood leukemia care, going beyond state-of-the-art:
• CLOSER provided a good overview of the existing inequalities in the detection rate of specific genetic subtypes. After training in complex methods, we will gather new data on the detection rate of specific genetic subtypes, to confirm the improvement in the diagnostic process.
• CLOSER created different working groups, and specific guidelines on diagnosis and monitoring of childhood leukemia were produced. A training work plan was developed, including a twinning program with online and on-site training and an e-learning course on the integrated diagnosis of pediatric leukemia. The training program facilitated the access of CLOSER partners to international clinical trials that included complex methodologies and required strict quality controls.
• CLOSER 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 started to disseminate the message that research is essential to improve leukemia care. The section on the CLOSER website for patients and families will allow more direct interaction with families and provide them with useful material and resources.
• CLOSER has helped create Patient Advisory Groups in CLOSER participant countries, to empower patients and families and ensure that the voice of teenagers is heard.
• The built close relationship between CLOSER partners will foster a sustainable network to reduce inequalities between regions. We expect that the results of this project will contribute to long-lasting collaborations and the interchange of knowledge that may be expanded to other networks and regions beyond CLOSER.
• CLOSER provided a good overview of the existing inequalities in the detection rate of specific genetic subtypes. After training in complex methods, we will gather new data on the detection rate of specific genetic subtypes, to confirm the improvement in the diagnostic process.
• CLOSER created different working groups, and specific guidelines on diagnosis and monitoring of childhood leukemia were produced. A training work plan was developed, including a twinning program with online and on-site training and an e-learning course on the integrated diagnosis of pediatric leukemia. The training program facilitated the access of CLOSER partners to international clinical trials that included complex methodologies and required strict quality controls.
• CLOSER 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 started to disseminate the message that research is essential to improve leukemia care. The section on the CLOSER website for patients and families will allow more direct interaction with families and provide them with useful material and resources.
• CLOSER has helped create Patient Advisory Groups in CLOSER participant countries, to empower patients and families and ensure that the voice of teenagers is heard.
• The built close relationship between CLOSER partners will foster a sustainable network to reduce inequalities between regions. We expect that the results of this project will contribute to long-lasting collaborations and the interchange of knowledge that may be expanded to other networks and regions beyond CLOSER.