THE BURITI NETWORK - DOWN SYNDROME

The Buriti Network is Brazil’s first Research,
Development, and Innovation (RDI) network
focused on Down syndrome (DS). The collaboration
of the scientific community and civil society aims
to enhance access to healthcare services for people
with DS, contribute to public policy development,
and drive scientific advancements with social impact.

THE BURITI NETWORK - DOWN SYNDROME

The Buriti Network is Brazil’s first Research, Development, and Innovation (RDI) network focused on Down syndrome (DS). The collaboration of the scientific community and civil society aims to enhance access to healthcare services for people with DS, contribute to public policy development, and drive scientific advancements with social impact.

As we strive towards our shared goals, the combined strength of each individual helps us accomplish more than we could alone.

The purpose is to integrate different entities (universities, civil society, and institutions) to advance actions that promote the observation and increase awareness of Down syndrome in our country, always seeking to improve living conditions, health, education, and citizenship. 

Through innovation, we aim to point out paths that facilitate the dissemination of information and provide support for the development of new guidelines for people with Down syndrome.

Come join us!

As we strive towards our shared goals, the combined strength of each individual helps us accomplish more than we could alone.

The purpose is to integrate different entities (universities, civil society, and institutions) to advance actions that promote the observation and increase awareness of Down syndrome in our country, always seeking to improve living conditions, health, education, and citizenship. 

Through innovation, we aim to point out paths that facilitate the dissemination of information and provide support for the development of new guidelines for people with Down syndrome.

Come join us!

BUT WHY "NETWORK"?

The definition of the word carries
the concept of interconnection.
A network is formed by several connected
links that transform into a harmonious
unit created for a common purpose.

AND WHY "BURITI"?

The inspiration for the network’s
name is original and very Brazilian:
the Buriti palm tree.
This striking tree originates from
the Amazon, but it is found
throughout the national territory.
Some indigenous peoples call it the
“tree of life”.
The Buriti is fully utilized by local
communities, from its fruits to its
leaves and fibers.

BUT WHY "NETWORK"?

The definition of the word carries the concept of interconnection. A network is formed by several connected links that transform into a harmonious unit created for a common purpose.

AND WHY "BURITI"?

The inspiration for the network’s name is original and very Brazilian: the Buriti palm tree. 

This striking tree originates from the Amazon, but it is found throughout the national territory. 

Some indigenous peoples call it the “tree of life”. 

The Buriti is fully utilized by local communities, from its fruits to its leaves and fibers.

HOW WILL THE NETWORK OPERATE?

The network will operate in four main spheres:

Formation of the
Brazilian Cohort
of People with
Down syndrome

Cohort is the gathering of a group of
individuals who share a common
characteristic: age, sex, place of birth,
exposure to a certain agent, or the
presence of a specific medical condition,
for example.

Creation of a
National Biobank

The Biobank will gather biological samples (blood, tissues, DNA, and other human biological materials) collected from the participants of the cohort.

Creation of a
Large-Scale Database

It will be a Brazilian database containing new information about people with Down Syndrome, including clinical, sociodemographic, educational, and biological variables of scientific and clinical relevance.

Creation of the
Health Observatory
for Down syndrome

A Health Observatory for Down Syndrome is a nationwide platform that gathers, for broad access, updated information extracted from various official databases regarding the health and social and demographic characteristics of this population.

Creation of a
Large-Scale Database

It will be a Brazilian database containing new information about people with Down Syndrome, including clinical, sociodemographic, educational, and biological variables of scientific and clinical relevance.

Creation of the
Health Observatory for
Down syndrome

A Health Observatory for Down syndrome
is a nationwide platform that gathers, for broad access, updated information extracted from various official databases regarding the health and social and demographic characteristics of this population.

WHO IS PART OF THE NETWORK?

The network comprises Brazilian experts from diverse fields, including epidemiology, biostatistics/bioinformatics, immunology, genetics, neurophysiology, and neuropsychiatry. Additionally, qualified professionals for project management are part of the team. Together, we aim to undertake a project of national scale and significance.

WHO IS PART OF THE NETWORK?

The network comprises Brazilian experts
from diverse fields, including epidemiology,
biostatistics/bioinformatics, immunology,
genetics, neurophysiology, and
neuropsychiatry. Additionally, qualified
professionals for project management are
part of the team. Together, we aim to
undertake a project of national scale
and significance.

14 national
research
groups

6 international
research
groups

22 civil
society institutions

14 national
research groups

6 international
research
groups

22 civil society
institutions

Through civil society, the Network will also work on
disseminating information, promoting education
within the Down syndrome community and among their families.

Through civil society, the
Network will also work on disseminating information, promoting education within
the Down syndrome community and among their families.

AND HOW WILL THE NETWORK HAVE COVERAGE?

The Network will be developed with the support of multiplier hubs spread across all regions of Brazil.

Called Buritis-SD, these institutions already serve people with Down syndrome and, due to their importance, can create a transformative effect wherever they are located.

AND HOW WILL THE NETWORK
HAVE COVERAGE?

The Network will be developed with
the
support of multiplier hubs spread
across all regions of Brazil.

 

Called Buritis-SD, these institutions
already serve people with Down
syndrome and, due to their importance,
can create a transformative effect 
wherever they are located.

WHO ARE THE PEOPLE INVOLVED?

Executive Committee

WHO ARE THE PEOPLE INVOLVED?

Executive Committee

Augusto Afonso Guerra Júnior - UFMG

Ph.D. in Public Health – Epidemiology from the Faculty of Medicine at the Federal University of Minas Gerais, is an Associate Professor and researcher in pharmacoepidemiology, pharmacogenomics, pharmacoeconomics, and data engineering at the same university. He coordinates the Collaborating Center for the Unified Health System (SUS) for Health Technology Assessment and Excellence (CCATES/UFMG) and produces research and reports, in partnership with the Ministry of Health, to support decision-making by Conitec/SUS regarding health technologies and clinical protocols.

Claudia Moreira - Alana

Graduated in Pharmacy and Biochemistry, Claudia holds a Ph.D. in Biological Sciences (Molecular Biology) from UNIFESP in partnership with the University of Michigan. She has worked on projects at UFRJ in collaboration with the Center for Disease Control and Prevention (CDC), focusing on improving laboratory infrastructure in Mozambique and studying HIV prevalence in Angola. Currently, Claudia serves as a Project Coordinator at the Alana Foundation and Instituto Alana, where she oversees initiatives related to Down syndrome, including funding clinical research and relevant actions.

Érika Cristina Pavarino - FAMERP

Ph.D. from UNESP – São José do Rio Preto and Associate Professor by FAMERP, she is an Adjunct Professor in the Department of Molecular Biology at the School of Medicine of São José do Rio Preto and teaches Genetics, Medical Genetics, and Molecular Biology in the undergraduate programs in Nursing, Medicine, and Psychology. She is also an Associate Professor in Human and Medical Genetics. Her research focuses on Biomarkers and Genetic Clinical Investigation in Human Diseases (with emphasis on Down syndrome) and Genetics and Cancer.

Gabriela Arantes Wagner - UNIFESP

Mother of Laura Wagner Kummrow, who has Down syndrome, Gabriela is the Associate Vice Provost of the Extension and Culture Department and an Adjunct Professor in the Department of Preventive Medicine. She is also a Supervisor in the Postgraduate Program in Collective Health at the Federal University of São Paulo. Gabriela holds a Postdoctoral degree from the Department of Epidemiology at the School of Public Health, University of São Paulo, and is a Researcher at the Scientific and Technical Committee of the Brazilian Federation of Down Syndrome Associations and the Jô Clemente Institute.

Gustavo Schiavo Matias - Instituto Jô Clemente

Gustavo Schiavo Matias holds a Bachelor’s degree in Biology, a Master’s, and a Ph.D. in Sciences from the University of São Paulo (USP). He is a senior project analyst at the Research and Innovation Center (CEPI) of the Jô Clemente Institute, where he optimizes and executes proposals related to the areas of rare diseases, intellectual disability, and Autism Spectrum Disorder (ASD).

Luciene Covolan - UNIFESP

Luciene Covolan is a Full Professor in the Department of Physiology at the Federal University of São Paulo, with three postdoctoral degrees. She serves as a reviewer for various international journals and is an Editor for Frontiers in Neuroscience and Arquivos de Neuropsiquiatria. Her research focuses on Neurophysiology, with a primary focus on epilepsy, cellular injury, neurogenesis, animal behavior, deep brain stimulation, and intellectual disability. She participates in several international research groups and is a Researcher at CNPq.

Orestes Vicente Forlenza - IPQ-USP

Orestes Vicente Forlenza holds a Master’s and Ph.D. from the Psychiatry Program at the Faculty of Medicine, University of São Paulo. He has a specialization in Geriatric Psychiatry from the University of London. He is a Livre Docente Professor and Full Professor in the Department of Psychiatry at FMUSP, where he is engaged in clinical care, teaching, and research with a focus on Geriatric Psychiatry and Neurosciences. Currently, he serves as the Head of the Department of Psychiatry at FMUSP. He is a member of the Coordinating Committee and a supervisor in the Psychiatry Postgraduate Program at FMUSP.

Rosane Lowenthal - FCMSCSP

Rosane Lowenthal is the Vice-Director of the Medicine course at the Faculty of Medical Sciences of Santa Casa de São Paulo and an Adjunct Professor in the Department of Mental Health at the same university. She holds a Postdoctoral degree in Psychiatry and Medical Psychology from UNIFESP, and a Ph.D. in Disorders of Learning from the Universidade Presbiteriana Mackenzie. She is currently a collaborator of the Down Syndrome Interesting Medical Group. She served as the president of the Brazilian Federation of Down Syndrome (2006-2008) and actively participated in the development of the National Policy for Special Education with a Perspective on Inclusive Education.

Susan Pereira Ribeiro - Emory University

Susan Pereira Ribeiro is a biologist with a Ph.D. and postdoctoral training in Immunology from the School of Medicine at the University of São Paulo. Currently, she is a Professor at Emory University in the United States. With over 15 years of experience in basic immunology research and translational research, she leads studies in the field of infectious diseases (including HIV and COVID-19) and research related to immune alterations in patients with Down syndrome. She applies multi-omics techniques (single-cell analysis, epigenetics, flow cytometry, metabolomics, microbiomics, etc.) and systems biology to integrate data to address fundamental questions about the mechanisms underlying various pathologies.

Augusto Afonso Guerra Júnior - UFMG

Ph.D. in Public Health – Epidemiology from the Faculty of Medicine at the Federal University of Minas Gerais, is an Associate Professor and researcher in pharmacoepidemiology, pharmacogenomics, pharmacoeconomics, and data engineering at the same university. He coordinates the Collaborating Center for the Unified Health System (SUS) for Health Technology Assessment and Excellence (CCATES/UFMG) and produces research and reports, in partnership with the Ministry of Health, to support decision-making by Conitec/SUS regarding health technologies and clinical protocols.

Claudia Moreira - Alana

Graduated in Pharmacy and Biochemistry, Claudia holds a Ph.D. in Biological Sciences (Molecular Biology) from UNIFESP in partnership with the University of Michigan. She has worked on projects at UFRJ in collaboration with the Center for Disease Control and Prevention (CDC), focusing on improving laboratory infrastructure in Mozambique and studying HIV prevalence in Angola. Currently, Claudia serves as a Project Coordinator at the Alana Foundation and Instituto Alana, where she oversees initiatives related to Down syndrome, including funding clinical research and relevant actions.

Érika Cristina Pavarino - FAMERP

Ph.D. from UNESP – São José do Rio Preto and Associate Professor by FAMERP, she is an Adjunct Professor in the Department of Molecular Biology at the School of Medicine of São José do Rio Preto and teaches Genetics, Medical Genetics, and Molecular Biology in the undergraduate programs in Nursing, Medicine, and Psychology. She is also an Associate Professor in Human and Medical Genetics. Her research focuses on Biomarkers and Genetic Clinical Investigation in Human Diseases (with emphasis on Down syndrome) and Genetics and Cancer.

Gabriela Arantes Wagner - UNIFESP

Mother of Laura Wagner Kummrow, who has Down syndrome, Gabriela is the Associate Vice Provost of the Extension and Culture Department and an Adjunct Professor in the Department of Preventive Medicine. She is also a Supervisor in the Postgraduate Program in Collective Health at the Federal University of São Paulo. Gabriela holds a Postdoctoral degree from the Department of Epidemiology at the School of Public Health, University of São Paulo, and is a Researcher at the Scientific and Technical Committee of the Brazilian Federation of Down Syndrome Associations and the Jô Clemente Institute.

Gustavo Schiavo Matias
Instituto Jô Clemente

Gustavo Schiavo Matias holds a Bachelor’s degree in Biology, a Master’s, and a Ph.D.
in Sciences from the University of São Paulo (USP). He is a senior project analyst at the Research and Innovation Center (CEPI) of the Jô Clemente Institute, where he optimizes and executes proposals related to the areas of rare diseases, intellectual disability, and Autism Spectrum Disorder (ASD).

Luciene Covolan - UNIFESP

Luciene Covolan is a Full Professor in the Department of Physiology at the Federal University of São Paulo, with three postdoctoral degrees. She serves as a reviewer for various international journals and is an Editor for Frontiers in Neuroscience and Arquivos de Neuropsiquiatria. Her research focuses on Neurophysiology, with a primary focus on epilepsy, cellular injury, neurogenesis, animal behavior, deep brain stimulation, and intellectual disability. She participates in several international research groups and is a Researcher at CNPq.

Orestes Vicente Forlenza - IPQ-USP

Orestes Vicente Forlenza holds a Master’s and Ph.D. from the Psychiatry Program at the Faculty of Medicine, University of São Paulo. He has a specialization in Geriatric Psychiatry from the University of London. He is a Livre Docente Professor and Full Professor in the Department of Psychiatry at FMUSP, where he is engaged in clinical care, teaching, and research with a focus on Geriatric Psychiatry and Neurosciences. Currently, he serves as the Head of the Department of Psychiatry at FMUSP. He is
a member of the Coordinating Committee and a supervisor in the Psychiatry Postgraduate Program at FMUSP.

Rosane Lowenthal - FCMSCSP

Rosane Lowenthal is the Vice-Director of the Medicine course at the Faculty of Medical Sciences of Santa Casa de São Paulo and an Adjunct Professor in the Department of Mental Health at the same university. She holds a Postdoctoral degree in Psychiatry and Medical Psychology from UNIFESP, and a Ph.D. in Disorders of Learning from the Universidade Presbiteriana Mackenzie. She is currently
a collaborator of the Down Syndrome Interesting Medical Group. She served as the president of the Brazilian Federation of Down Syndrome (2006-2008) and actively participated in the development of the National Policy for Special Education with
a Perspective on Inclusive Education.

Susan Pereira Ribeiro -
Emory University

Susan Pereira Ribeiro is a biologist with a Ph.D. and postdoctoral training in Immunology from the School of Medicine
at the University of São Paulo. Currently, she is a Professor at Emory University in the United States. With over 15 years of experience in basic immunology research and translational research, she leads studies in the field of infectious diseases (including HIV and COVID-19) and research related to immune alterations in patients with Down syndrome. She applies multi-omics techniques (single-cell analysis, epigenetics, flow cytometry, metabolomics, microbiomics, etc.) and systems biology
to integrate data to address fundamental questions about the mechanisms underlying various pathologies.

Augusto Afonso Guerra Júnior - UFMG

Doutor em Saúde Pública – Epidemiologia pela Faculdade de Medicina da
Universidade Federal de Minas Gerais, é Professor Associado e pesquisador
em farmacoepidemiologia, farmacogenômica, farmacoeconomia e
engenharia de dados nesta mesma universidade. Coordena o Centro
Colaborador do SUS para Avaliação de Tecnologias e Excelência em Saúde
(CCATES/UFMG) e produz pesquisas e pareceres, em parceria com o
Ministério da Saúde, para tomada de decisão da Conitec/SUS sobre
tecnologias em saúde e protocolos clínicos.

Claudia Moreira - Alana

Graduada em Farmácia e Bioquímica, é doutora em Ciências Biológicas
(Biologia Molecular) pela Unifesp em parceria com a Universidade de
Michigan. Trabalhou em projetos da UFRJ em colaboração com o Center for
Disease Control and Prevention (CDC) na melhoria da infraestrutura de
laboratórios em Moçambique e nos estudos de prevalência do HIV em
Angola. Atualmente é Coordenadora de Projeto no Alana Foundation e
Instituto Alana. O projeto trata de questões relacionadas à síndrome de
Down financiando pesquisas clínicas e ações relativas ao tema.

Érika Cristina Pavarino - FAMERP

Doutora pela UNESP – São José do Rio Preto e livre docente pela
FAMERP, é Professora Adjunta do Departamento de Biologia Molecular
da Faculdade de Medicina de São José do Rio Preto e docente das
disciplinas de Genética, Genética Médica e Biologia Molecular dos
cursos de graduação em Enfermagem, Medicina e Psicologia. É também
Livre Docente em Genética Humana e Médica.
Desenvolve pesquisas nas linhas de Biomarcadores e Investigação
Genético-Clínica em Doenças Humanas (com ênfase em síndrome de
Down) e Genética e Câncer.

Gabriela Arantes Wagner - UNIFESP

Mãe da Laura Wagner Kummrow, com síndrome de Down, é Pró-reitora Adjunta da Pró-reitoria de Extensão e Cultura e Professora Adjunta do Departamento de Medicina Preventiva. Também é Orientadora do Programa de Pós-graduação em Saúde Coletiva da Universidade Federal de São Paulo. Possui Pós-doutorado no Departamento de Epidemiologia da Faculdade de Saúde Pública da USP e é Pesquisadora do Comitê Técnico Científico da Federação Brasileira das Associações de síndrome de Down e do Instituto Jô Clemente.

Gustavo Schiavo Matias - Instituto Jô Clemente

Graduado em Biologia, Mestre e PhD em Ciências pela Universidade de
São Paulo (USP). É analista sênior de projetos do Centro de Pesquisa e
Inovação (CEPI) do Instituto Jô Clemente, onde otimiza e executa
propostas relacionadas aos eixos de atuação de doenças raras,
deficiência intelectual e Transtorno do Espectro Autista (TEA).

Luciene Covolan - UNIFESP

Professora Titular do Departamento de Fisiologia da Universidade Federal
de São Paulo, com três pós-doutorados. É revisora de diversos periódicos
internacionais e Editora no Frontiers in Neuroscience e Arquivos de
Neuropsiquiatria. Desenvolve pesquisas  em Neurofisiologia, atuando
principalmente nos seguintes temas: epilepsia, lesão celular, neurogênese,
comportamento animal, estimulação cerebral profunda  e deficiência intelectual.
Participa de vários grupos de pesquisa internacionais e é
Pesquisadora do CNPq.

Orestes Vicente Forlenza - IPQ-USP

É Mestre e Doutor pelo Programa de Psiquiatria da Faculdade de Medicina
da Universidade de São Paulo. Possui especialização em Psiquiatria
Geriátrica pela Universidade de Londres É Professor Livre Docente e
Professor Titular do Departamento de Psiquiatria da FMUSP, exercendo
atividades de assistência, ensino e pesquisa com enfoque em Psiquiatria
Geriátrica e Neurociências. Atualmente é Chefe do Departamento de
Psiquiatria
da FMUSP. Membro da Comissão Coordenadora e orientador do
Programa de Pós-graduação em Psiquiatria da FMUSP.

Rosane Lowenthal - FCMSCSP

É Vice-diretora do curso de medicina da Faculdade de Ciências Médicas da Santa Casa de São Paulo e Professora Adjunta do Departamento de Saúde Mental da mesma universidade. Possui, Pós-doutorado em Psiquiatria e Psicologia Médica pela UNIFESP, e doutorado em Distúrbios do pela Universidade Presbiteriana Mackenzie. Atualmente é colaboradora do Down Syndrome Interesting Medical Group. Foi presidente da Federação Brasileira de Síndrome de Down (2006-2008). Também participou ativamente da elaboração da Política Nacional da Educação Especial com Pespectiva na Educação Inclusiva.

Susan Pereira Ribeiro - Emory University

Bióloga com doutorado e pós-doutorado em Imunologia pela Faculdade de Medicina da USP,  é atualmente Professora da Emory University nos Estados Unidos. Possui mais de 15 anos de experiência em pesquisa em imunologia básica e também em pesquisa de tradução. Lidera estudos na área de doenças infeciosas (incluindo HIV e COVID19) e estudos relacionados às alterações imunes em pacientes com síndrome de Down. Aplica técnicas de multiômicas (analise de células únicas, epigenéticas, citometria de fluxo, metaboloma, microbioma, etc) e biologia de sistemas para integrar os dados para responder perguntas fundamentais sobre os mecanismos causadores de várias patologias.

MANAGEMENT TEAM

Ariella Belan - Scientific Manager

Bruno Alvarez - Operational Analyst

Edna Betania Braz dos Santos - Administrative Support

Elizabeth Prado - Data Analyst

Rita Alves - Operational Director

An Interinstitutional project approved
by the brazilian Ministry of Science,
Technology, and Innovation (MCTI).

An Interinstitutional project approved by the brazilian Ministry of Science, Technology, and Innovation (MCTI).

FUNDING: CNPq and Instituto Alana

FUNDING: CNPq and Instituto Alana

PROPOSING INSTITUTION:

EXECUTING INSTITUTIONS:

CONTACT