“The basic health and development problems remain unanswered, we do not know the trajectories of breastfeeding children in the first months of life, a fundamental aspect”, says the coordinator of an unprecedented study in the world, conducted by the Jô Clemente Institute (IJC) with the foundation of support in search of the State of San Paolo (Fapesp) and the São Paulh Health Secretariat.
Used as symbols of inclusion, embracing and applauded, highlighted in various sectors, people with Down syndrome still face abandonment, capacity and, in many ways, are considered unknown, enigmatic, described and overloaded of stigma. Brazil has, according to the Ministry of Health, about 300,000 inhabitants with this condition, caused by the trisomy of chromosome 21. So, we celebrated on Friday, 21/3, the day of World Down syndrome, but in a scenario that should be something of the past, after all, we have already crossed the first quarter of the 21st century.
Given this contradiction and also many barriers overcome over the years, what should we still know about Down syndrome? A search called ‘Birth cohort T21 São Paulo, long -term study on health and development of children with Down syndrome in the city of San PaoloConducted by the Jô Clemente Institute (IJC) with the São Paulo State Research Support Foundation (Fapesp) and the municipal health secretariat of San Paolo, looking for new information.
the term ‘cohort’ Come from the Latin ‘Cohors’which identified a tenth of the legions of Roman soldiers who marked together in the warning campaigns of the Empire. In epidemiology, it identifies a group of people with a common experience. A cohort study observes and analyzes the relationship between risk factors or characteristics and the development of diseases in population groups. It is longitudinal, with the participants observed for a pre -established period of time, to verify the changes in the occurrence of the disease associated with the risk factor. Since the observation unit is the individual, follow -up -up allows you to detect the changes that have occurred in all the participants in the study.
“This is the first research in the world that will determine the health and development trajectories with the pursuit of prospective design in the early years of life. To illustrate the pioneer. There are only two cohort studies with children with Down syndrome. The two studies are limited to a health component: the heart -pounding system, with some dozen variables”, says Fábio Bertapelli, a project project.
The “Coorte T21 São Paulo”, explains Bertapelli, will investigate at least two thousand variables of health and development of the child and mother in 25 areas: – prevalence of the nascent growth regulatory models – Food habits for children – Mother’s Mental Health Acts – Quality of life of the global neuropsychomotor – Motors – Mother and Child Physical Activity – Health of the Ophthalmological Health – Vitalist. Child – Mother Baby and Development Validation
“The main challenge lies in the complexity of epidemiological surveillance as regards the identification of Down syndrome in the most populous city in the country. There is still underground of Down born syndrome. Furthermore, most of the research start in the most advanced ages, for two years of life, for example for participation, for example for participation, for example for participation, for example, as much as” explains the coordinator.
According to the Jô Clemente Institute, the project began in 2023 and is currently in “Collection for the construction of tools”, in which 80 families participate in the development of questionnaires. The “final collection” phase should be started in June or July this year, waiting for the first results obtained in the same period of 2026.
“The construction of questionnaires, forms of research and test protocols should include the active participants of the participants in research: fathers, mothers and children. This approach represents a good scientific practice, still little adopted by many centers and workshops, mainly due to the complexity involved in the studies of this nature. However, involving families in this process, we have been able to develop research tools more waiting with reality.”
The coordinator states that the method translates into more accurate and relevant questionnaires, as well as protocols of less invasive and more accessible tests for mothers and other participants, which guarantee high quality data, but also respect and appreciation of the experience of the families involved.
“We are the first in Brazil to adopt the state sensors -able to evaluate the vital signs of babies and mothers. We will monitor the cardiorespiratory profile (ECG, heart rate and respiratory rate) and day and night movements during children with infrastructure and accurate life activities. Protocols that will allow them to examine them without sedation”, Bertapelli detail.
Enlarged inclusion – In the current scenario, discussions on people with disabilities cross various fundamental areas, in particular education and work. Therefore, a centralized study in “public policies directed to the health of people with Down syndrome, as well as opening new paths for future therapeutic interventions”, as described the “Coorte T21”, would not excessively limited to a single area?
“We are not aware of the trajectories of breastfeeding children with down syndrome in the first months of life, a fundamental aspect for health and development. Although cutting technology plays an important role in the research, health and development of development problems are not yet in response. Surveillance models, interventions aimed at early childhood and attention to the main caregiver, the mother”, replies Fábio Bertapelli.
Source: Terra
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