The School Integration Program (PIE) is one of the most critical educational inclusion policies in
Chile. PIE is a form of special subsidy to schools, using as criteria temporary and permanent
special educational needs. It is found throughout the national territory, considered successful at
the implementation level and in the integration of new support professionals. However, it has
received criticism such as the low relationship with concepts such as school effectiveness, the
individualization, and stigmatization of program users by focusing on deficits and not so much
on barriers and facilitators of inclusion, as well as the low access and participation of students
with disabilities. Furthermore, few studies list children participating in PIE as primary informants.
The present study seeks to know and analyze boys’ and girls’ daily experiences with disabilities
in various areas of the national territory. The conceptual framework is the social studies on
disability to understand the experience of children with disabilities in a social context that can
be both beneficial and detrimental to their school inclusion. The other reference for the project
is the new social studies of childhood while promoting that children are valid informants of their
realities. Objectives: This study aims to analyze the perspectives of children in situations of
motor and sensory disability participating in the PIE about the barriers and facilitators for
inclusion in their daily school experiences, as well as the influence that PIE has had on their
school lives. Methodology: it is a qualitative study of an analytical nature to be carried out in 5
macro zones of the national territory for three years, through specially designed narrative
interviews with 31 children with motor and sensory disabilities, including interviews with the PIE
coordinators of their schools. Expected results: The project hopes to generate knowledge about
PIE and disability as a special educational need, based on the experience of children with
disabilities, to account for their specific experiences and needs, and possible solutions to the
barriers presented. It also seeks to generate specific methodological knowledge to collect data
with children with disabilities. It is a transdisciplinary project in that disability is a phenomenon
that must be studied from different fields; therefore, an educational psychologist, a social
psychologist, an educator, and a kinesiologist are included in the researchers’ team.

Las interacciones entre los individuos (médicos, pacientes, familias, entre otros), objetos (protocolos, evidencia, infraestructura y medicamentos por ejemplo) y procedimientos (ensayos clínicos, la producción de evidencia, intervenciones médicas, etc.) forman redes socio-médicas y colectivos híbridos que moldean las decisiones de salud. Estas redes se encuentran atravesadas por tensiones como la relación médico-paciente, el mercado farmacéutivo y la producción de la evidencia científica. Sin embargo, en las enfermedades raras estas tensiones no se articulan de la misma forma. Para que una enfermedad sea denominada como rara, debe tener una incidencia menor a 1 en 2000 personas según el criterio europeo. A diferencia de las enfermedades frecuentes, quienes padecen una enfermedad rara tienen una expectativa de vida muy limitada, la relación médico-paciente se deconoce en un escenario donde el/la enfermo/a o sus cuidadores pueden saber más que el especialista y las muestras naturalmente pequeñas hacen difícil el desarrollo de evidencia científica para la construcción de guías y protocolos, así como para la aprobación de terapias farmacológicas.
En este sentido, las enfermedades raras son objetos epistémicos. Esto es, objetos o cosas indeterminadas e incompletas en relación con los objetos cotidianos más sólidos y que se encuentran en un proceso continuo de ser definido materialmente. En ellos los fenómenos e instrumentos, el objeto y la experiencia, los conceptos y métodos están entremezclados en un proceso continuo de producción mutua. Las enfermedades raras, como categoría de objetos epistémicos, establecen relaciones intestables que producen simultáneamente diferentes formas de estar y ser en el mundo. Estudiar las decisiones de salud en enfermedades raras y los entramados que producen, no supone la exploración de diversas “perspectivas del mundo”, sino más bien la aceptación de “mundos” (la idea anglosajona de wordling); un giro ontológico que permite reparar la fractura cartesiana y sus efectos en las nociones de “verdad” y “adecuación”, por el reconocimiento de una pluralidad de mundos, compuestos por redes y ensamblajes de elementos heterogéneos, humanos y no humanos, cuyos tránsitos y guiones son negociados permanentemente entre sí. Para efectos de esta investigación las decisiones de salud no se consideran como cogniciones individuales, racionales y soberanas, sino como aquellas que se producen a partir de colectivos híbridos anclados en la idea de biociudadanía. De allí que no están localizadas en objetos o individuos particulares, sino en cogniciones colectivas producidas en redes socio-médicas -paráfrasis de las redes socio-técnicas- que permite subrayar el carácter biociudadano y biomédico que contexualizan a las decisiones de salud en el caso de las enfermedades raras.
El objetivo que guía esta investigación es: Explorar las interacciones y relaciones cotidianas que constituyen colectivos híbridos y redes socio-médicas en relación a las enfermedades raras, y su impacto en las decisiones de salud en este heterogéneo tipo de condiciones. Para esto se proponen los siguientes objetivos específicos:
1. Explorar los colectivos híbridos y redes socio-médicas que individuos, objetos y procedimientos constituyen en este tipo de condiciones.
2. Analizar las prácticas, materialidades y lógicas que emergen de estas relaciones y son relevantes en la toma de decisiones de salud de enfermedades raras.
3. Explorar las subjetividades, identidades y biociudadanías producidas en los colectivos híbridos en torno a las enfermedades raras.
4. Analizar la configuración de escenarios de desigualdad y precariedad en torno a las enfermedades raras, desde la constitución de redes socio-médicas y colectivos híbridos en el contexto chileno.
La metodología de esta investigación se desprende de un enfoque epistemológico post-cualitativo. El diseño consiste en tres modúlos: (1) Módulo de entramados normativos y prácticas expertas (análisis de documentos sobre diagnóstico y tratamiento de enfermedades raras en Chile, etnografía de dispositivos y entrevistas a expertos), (2) Módulo de biociudadanías (análisis de documentos de organizaciones de pacientes, etnografías de prácticas con organizaciones de pacientes y narrativas postcualitativas) y (3) Módulo de redes socio-médicas y colectivos híbridos (foros híbridos).
En los resultados esperados, este estudio impacta en tres áreas de los estudios sociales de la salud: (1) Aproximadamente un 5,6% de la población chilena. Producir información respecto a la toma de decisiones de salud es una contribución a cualquier persona con este tipo de enfermedades.(2) La capacidad de acceder a diversas redes para la gestión de decisiones de salud es una dimensión que está cruzada por la desigualdad social, particularmente en el caso chileno donde vivir con una enfermedad rara es vivir en una doble vulneración. (3) Este estudio permite entender que hay cosas no-médicas que están en juego en las decisiones de salud, y en ese sentido, también aporta a pensar las decisiones en enfermedades frecuentes, en tanto permite explorar otras dimensiones de las decisiones de salud, que se invisibilizan más cuando están normalizadas por una ocurrencia más frecuente.

This project aims to analyze the dressing discursive-material entanglements and the political effects of apparel design on fat people. From new materialisms and posthumanisms, the body-wardrobe relationship may be thought in a continuum (Braidotti, 2015): discursive and material issues are articulated and intertwined in design (Bari, 2019; Coleman, 2008; Hekman, 2014, 2010). In this sense, apparel design is not limited to garment shapes, but as an activity or practice that installs a way of being in the world. In other words, this can be understood as a becoming, which is also material, discursive, bodily and technological.

Studying clothing, as a practice, from design allows us to investigate a way of being in/with the world or worldings in which a diversity of matters occur (Haraway, 2008) that are not limited only to the constitution of the self through the use of garments. We seek to articulate the way of becoming human through design and clothing and overcome the construction of inequities and the need to reformulate design based on these dynamics. Investigating the design and clothing of the fat body overcomes the opposition between body/being and appearance. Rather, they are entangled issues (Bari, 2019) where, to name a few, not only the body and clothing are articulated, but also networks (Forlano, 2017), accessories (Merrill and Filstrup, 2013), technologies and environmental issues (Forlano, 2017). From this perspective, the human/non-human distinction is outweighed: dressing is not the action of choosing objects to wear, but a doing where things that are constituted as a network or phenomenon (Barad, 2007) in which entities and relationships have multiple forms, where objects do things. This has significant implications for the study of the fat body, as it is not only that there are no clothes which allow a diversity of possible identities, but that both fat and apparel design are constantly made in dressing: they are part of a worlding that goes away creating openly and critically in which discrimination and violence emerge but where other worldings are possible (Forlano, 2017).

This research comprises a post-qualitative epistemological approach (Lather and St. Pierre, 2013),
characterized by the speculative commitment of the research team which focuses on what is done, rather than what is, developing latent possibilities of what is being investigated and avoiding the logic based on the representation. Lather (2013) refers to this as QUAL 4.0; a work technique which is focused on becoming, carrying out innovative material practices in research that allow knowledge production in a different way. The project is designed in three modules: (i) Garments ethnographies (we seek to document practices, objects, agencies, bodies, technologies and apparel, among others, that are entangled in fat people apparel design and dressing), (ii) Focus groups (aim to document discriminatory practices in relation to the “being fat” experience and (iii) Design of a collection (the purpose is to intervene the entanglements where the fat body and clothing intra-act).
Three kind of results are expected: (i) Fat discrimination has been widely documented in English-speaking countries; however, we do not have data on Chile. This project aims to produce information and situated knowledge about fat discrimination. (ii) It is expected to articulate different disciplines such as socialpsychology, so ciology and design in a transdisciplinary and novel relationship. And (iii) as part of the research we expect to intervene the reality we are studying. This is, the design of a clothing collection will be made with a co-participatory strategy as praxis (Lather, 1986), as a form of action and participation.

EPIGENOMIC PROGRAMMING IN THE EARLY FETAL BLOOD-BRAIN BARRIER BY GESTATIONAL
HYPOXIA: CONSEQUENCES FOR THE NEURO-ENDOTHELIAL LIFESPAN.

Non-communicable diseases (NCDs) are responsible for 74% of worldwide human deaths, with cardiovascular
causes in the first place (1). NCDs are determined by a combination of environmental, genetic and epigenetic
factors. In fact, adverse intrauterine conditions, such as reduced oxygen availability (hypoxia) and oxidative
stress, can increase the risk of developing diseases during life, a phenomenon known as Fetal Programming
or Developmental Origins of Health and Disease (DOHaD). Intrauterine hypoxia (IUH) affects most of the
pregnancies in high altitudes populations (> 2500m) (2-4) and 3-4% in lowlands, with uteroplacental and
developmental complications (4,5). We, and a couple of others, have recently shown that IUH determines
cardiovascular oxidative stress during lifespan affecting endothelial function and vasodilator capacity, similar
to what is seen with aging. The hypoxia-induced responses during development are responsible for
fetal survival, but also determine mechanisms that program postnatal cardiovascular function
that may increase cardiovascular health risks and accelerate aging (6). This proposal aims to
determine the mechanisms and trace the origins and outcomes of cardiovascular dysfunction resulting from
intrauterine hypoxia and oxidative stress, and further identify the interrelated senescence mechanisms in
the heart and blood vessels. To assess the aforementioned, we will study the effects of IUH on cardiovascular
aging along lifespan, as important regulators of the function, structure and biomechanical properties of the
cardiovascular system.

Antecedentes: los sobrevivientes de cáncer son una población en rápido crecimiento con necesidades de salud específicas. En los EE. UU., aproximadamente 17 millones de adultos son sobrevivientes de cáncer, lo que representa el 5 % de la población adulta, y las proyecciones indican que este número aumentará a 20 millones para 2026, según el Instituto Nacional del Cáncer de Estados Unidos. Los eventos cardiovasculares son la principal causa (no maligna) de muerte entre los sobrevivientes de cáncer, con un riesgo de muerte aproximadamente siete veces mayor en relación con sus contrapartes de la misma edad. Por tanto, el estudio de los factores de riesgo CV en pacientes oncológicos pediátricos supervivientes es un tema en auge, con ensayos clínicos prospectivos en marcha y que actualmente carecen de una base mecanística. Cada año en Chile se presentan aproximadamente 400 casos nuevos de cáncer infantil, y sabiendo que la sobrevida global es cercana al 60%, llegamos a un número apreciable de niños (alrededor de 240) que logran superar su enfermedad año tras año. Sin embargo, desde el inicio del programa, la monitorización del riesgo CV ha sido insuficiente, a pesar de que el 60-70% de los protocolos del PINDA (Programa Infantil para Drogas Antineoplásicas) incluyen antraciclinas, que son agentes quimioterápicos relacionados con alto riesgo de cardiotoxicidad. En relación a las medidas de intervención disiponibles, es bien sabido que el entrenamiento aeróbico conduce a una mayor capacidad/aptitud cardiorrespiratoria, CCR (inglés CRF; cardiorrespiratoty fitness). Por otro lado, el tipo de entrenamiento, en el caso de resistencia aumenta significativamente la fuerza muscular y mejora la forma física, asociándose a mejoría de los outcomes cardiovasculares en adultos sobreviviente de cáncer. En esta población se ha visto que un CCR más baja se asocia con una mayor carga de síntomas y un mayor riesgo de morbilidad y mortalidad CV por afecciones no cancerosas; sin embargo, la relación entre la aptitud física expresada por la CCR y la ocurrencia de cardiotoxicidad no ha sido bien caracterizadas en la población infantil, o en la transición infantil-adulto, ya que cuentan con un vacío de seguimiento CV. Con base en estos antecedentes, planteamos la hipótesis de que mejorar la condición/aptitud física en una cohorte de sobrevivientes de cáncer infantil a través de la intervención con ejercicios se asocia con una disminución de los factores de riesgo cardiovascular y los marcadores ocurrencia de cardiotoxicidad.

The quality of fetal and early post-natal environment influences lifelong health and predicts the risk for a range of non-communicable chronic diseases (NCDs). These observations form the basis of the “Developmental Origins of Health and Disease” (DOHaD hypothesis), which indicates that the intrauterine signals that compromise fetal growth also act to “program” tissue differentiation in a manner that predisposes later illnesses. Interestingly, the DOHaD hypothesis asserts that some aging-associated diseases that occur in adults are closely related to the development and conditions in the intrauterine environment. Thus, aging and aging-associated diseases can be viewed, at least in part, as the result of a developmental program activated early in embryogenesis and persists throughout the organism’s lifespan. On the other hand, one of the main consequences of this programming is Fetal Growth Restriction (FGR) and which remains a leading
cause of perinatal morbidity and mortality, affecting about 10% of pregnancies, but the incidence is reportedly sixfold greater in low-income countries depending on the region surveyed’s nutrition and health access availability. FGR is clinically defined as a fetal weight below the 10th percentile of normal for gestational age, associated with some loss of fetal-placental blood flow diagnosed by ultrasound, and it is a condition in which the potential growth of the fetus is negatively influenced by environmental and maternal factor; the short-term consequences of FGR are low birth weight (LBW) and the corresponding phenotype, which is associated with increased perinatal morbidity and mortality. Besides, the long-term effects include
a 2 to 3-fold increase in the risk of developing cerebrovascular disease in adulthood. Indeed, many neurodevelopmental dysfunctions originated in the antenatal period, but few studies have focused on how growth restriction interferes with normal brain development of the blood-brain barrier (BBB) in the FGR neonate. The BBB is a cellular network formed by a monolayer of neuro-endothelial and mural cells. The BBB regulates the transport of molecules into and out of the central nervous system (CNS) (selective permeability and integrity of the BBB). In cerebrovascular aging, BBB breakdown and dysfunction lead to leakages of components into the central nervous system (CNS), contributing to neurological deficits; growing evidence from genomic data shows that FGR vascular dysfunction is mediated by aging, with a series of prominent
hallmarks, including genetic and epigenetic alterations. These aging-associated epigenetic changes include DNA methylation, histone modification, chromatin remodeling, and non-coding RNA (ncRNA) regulation; however, how this mechanism regulates the aging process and contributes to aging-related BBB dysfunction remains elusive. We hypothesize that the impaired fetal growth conditions associated with epigenetic programming of aging-related DNA methylation, chromatin remodeling, and miRNA-omic profile of complex junctional genes in the neuro-endothelium, which can alter BBB integrity and permeability, increasing cerebral damage which impacts the perinatal and adulthood neurocognitive function.
This hypothesis will be addressed by the study of the effects of gestational chronic hypoxia on the aging epigenetic programming of gene expression of junctional complexes: Tight junction, adherens junction, and Gap junction family’s molecules, as important regulators of the permeability para and transcellular of the BBB. For this, we will use a well-established Guinea pig model of cerebrovascular programming (DOHaD model) to demonstrate DNA methylation shift, chromatin remodeling, miRNA-omic profile, and transcriptomic analyses in neuro-endothelial cells isolated from cortex and hippocampus from animals gestated under hypobaric hypoxia at two stages of life (juvenile period and adulthood). The methodology for this project is an in vivo assess locomotor, exploratory activity, and memory acquisition evaluation, and in vitro determinations of epigenetic regulation of aging in BBB from the cortex, hypothalamus, and neuro- endothelial cell culture primary at different stages of life in animals gestated under hypoxia. Our expected outcome is to improve the knowledge about neuro-endothelial epigenetic programming by aging induced by the FGR and enhance the characterization of those epigenomic patterns and mechanisms associated with BBB breakdown by intrauterine hypoxia. This project aims to demonstrate that the effect of gestational hypoxia can accelerate the permeability of the BBB by epigenetic mechanisms not yet studied and that these changes continue throughout life, producing further deterioration of brain function

Goal: This grant aims to describe the role of epigenetics programming in the progression of BBB injury in growth-restricted neonates. Furthermore, we will identify the molecules and mechanisms of junctional complexes and adhesion molecules of the BBB that are affected by gestational hypoxia.

The original contribution of this project is to trace the time course of origins and outcomes of the BBB permeability and integrity impairment related to epigenetic mechanisms, due to gestational chronic hypoxia.

Proyecto que busca establecer los efectos de un suplemento en base a miel sobre la salud y el bienestar, así como la respuesta al tratamiento en personas con úlcera gástricas.