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Childhood Leukemia: Overcoming distance between South America and Europe Regions

Periodic Reporting for period 1 - CLOSER (Childhood Leukemia: Overcoming distance between South America and Europe Regions)

Reporting period: 2019-01-01 to 2020-06-30

Cancer has become an important public health problem worldwide, and inequalities in access to cancer control result in differences in patients’ outcome.

Despite the improvement of survival rates in childhood leukaemia last years, there is still a gap in survival between regions, even within well-organised international cooperative groups. Childhood leukaemia 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 harmonise the levels of care and reduce inequalities in the outcome of childhood leukaemia patients in CELAC and European countries.

To do that, we will create a framework of collaborative, multidisciplinary research between CELAC and European regions. From a scientific point of view, we seek to facilitate a constant exchange of the knowledge on the biology and the technological approaches needed for the diagnosis and follow-up of childhood leukaemia between regions, provide additional resources to perform research and develop new simplified methods to assure a fast translation from bench to bedside.

From a social point of view, we will empower patients and families in leukaemia care and encourage the participation of civil society by analysing their particular needs, by promoting educational tools and communication and by launching a platform to exchange initiatives and experiences in patients care, always acting with the highest respect for the individualities of each country.

To make sure that we approach childhood leukaemia care from an integral perspective, we will include as partners researchers, physicians, patients and families, policymakers, small and medium-sized enterprises and civil society representatives.
CLOSER results achieved so far are summarized in three blocks:

1) Global results:
The Project Support Team has created an effective collaborative and multidisciplinary research framework between partners from Latin America (Argentina, Chile, Uruguay) and Europe (Austria, Czech Republic, Italy, United Kingdom, Spain).
Relevant recommendations for ethical committee procedures were created and distributed to all partners.
A data management plan was developed to ensure compliance with the ethics requirements set out in International Guidelines and Conventions.
The initial Communication and Dissemination strategy is being updated according to the new scenario after the pandemic.
The CLOSER corporate identity was designed, and the official website was launched: A new interactive area for patients and families has been created, with the idea to bring CLOSER research to people and will be launched in the next weeks.

2) Scientific results:
To map the current reality in leukemia diagnosis and follow-up in the participating countries, CLOSER collected data on (1) the existing country-specific detection rates of genetic subtypes of childhood acute lymphoblastic leukemia (ALL) and acute myeloid leukemia (AML) providing a good overview of the existing inequalities of the detection rate of specific genetic subtypes among partners and the different methodologies used to follow the measurable residual disease; (2) the existing resources and currently employed technologies used for their detection and follow-up; (3) interests in implementing new methodologies, and (4) use of single genetic aberrations for risk stratification in current and next clinical trial protocols.
To improve the accuracy of the diagnosis and create specific guidelines, different Working groups have been created: The Aneuploidy Working Group, the Next Generation Sequencing Working Group, and the Flow Cytometry Working Group.
A training program in the use of the different technologies needed for the diagnosis and follow-up of the different subtypes of childhood leukemia was defined. According to needs and offers of the partners, a Twinning program was established, and in 2019 both intracontinental and intercontinental stays were performed.
To improve the risk stratification of patients and apply personalized treatments, CLOSER will perform different prognostic studies in ALL and AML cases. During this reporting period, these studies and the relevant clinical and biological variables has been decided. The methodology to test, in-vitro, a battery of drugs in selected high-risk AML patients from Spain and Latin American centers has been implemented.

3) Social results:
To empower patients and families in Latin American regions, CLOSER has raised data on the existing childhood and adolescent cancer Organizations in Latin America and Europe. Also, a survey was designed 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, creating a Reservoir to raise all the existing materials in Spanish. A plan to include, develop, and distribute the material within the Consortium countries is underway.

Finally, CLOSER has started disseminating its message: all children and teenagers have the right to access the best possible treatment, and to enjoy the same opportunities for healing, taking into account their physical and emotional needs, without their origin or their socio-economic conditions being a condition for this. Thus, collaborative research, formed by all people involved in leukemia care, including patients and their families, is fundamental to improve the outcome of children with leukemia.
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:

Lack of epidemiological data: a report about the country-specific frequencies of genetic subtypes of pediatric ALL and AML, providing a good overview of the existing inequalities of the detection rate of specific genetic subtypes was produced. This information will serve as the basis for further analysis of the causes of inequalities.

Existence of complex methodologies for the diagnosis and follow-up of childhood leukemia: different working groups have been created to develop specific guidelines on subtypes of leukemia or methodologies. Also, a training work plan has been developed, including a twinning program and an online course on the integrated diagnosis of pediatric leukemia.

The lack of resources and training may jeopardize access to international clinical trials: The twinning program in 2019 allowed several trainees to learn and improve their skills in specific methodologies, prioritizing those methodologies that will be needed for the next clinical trials.

Different needs and commitment in research of patients and families in Latin America and Europe: 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.

Research may be perceived as distant and hostile in some LATAM regions: 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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