Hispano – American Brain Bank of Neurodevelopmental Disorders
CENE Objectives: Tissue distribution, Research, Teaching & Outreach
CENE is an organization with four goals: brain collection, research, education, and enhancing public awareness about the importance of human tissue availability for scientific research on brain function and disease. These activities are performed in Spanish and English, in Hispano-America and the US.
Brains collected by CENE are those from Hispanic and any other race and ethnicity donors with neurodevelopmental disorders, as well as from neurotypical donors.
Brain collection and tissue distribution for external research
CENE is currently collecting brains of patients with Autism Spectrum Disorder (ASD) and Fragile X Syndrome (FXS). CENE is also collecting brains with Down Syndrome and other neurodevelopmental disorders (NDDs). Tissue collected and distributed by CENE so far has made possible many pathology, molecular, and genetic studies. These studies have added a great deal of knowledge to the understanding of NDDs, in particular in FXS.
CENE promotes research collaborations between nodes, with the intention of supporting the development of young researchers focused on the study of ASD and other NDDs.
CENE promotes student interchange between nodes, including trainees at the undergraduate, graduate, postdoctoral, and early-career professors. Trainees at each node have the opportunity to participate in internodal projects and to perform internships in other CENE countries, giving them the opportunity to acquire an international scientific education.
One of CENE’s goals is to organize outreach activities that include information distributed to patients at their physician’s office and hospitals, to foundations dedicated to NDDs, in social-media dedicated to ASD education ( Facebook ; Twitter ), presentations at scientific conferences directed to researchers and physicians, and at public conferences directed to patients and families.
Neurodevelopmental disorders (NDDs) are a series of conditions that present with brain dysfunction due to an alteration in the processes of brain development. They present with neuropsychiatric, cognitive, and motor symptoms. Autism spectrum disorder (ASD) and Fragile X Syndrome (FXS) are two of the most common NDDs. Human brain tissue is a scarce resource that is obtained from postmortem donations. Postmortem donations in cases of neurodegenerative conditions, where the donors are of advanced age, is more common and numerous brain banks for these conditions exist around the world. In the case of NDDs, specifically autism, the reduced brain donation rate prevents researchers to investigate the pathology and fine anatomy in these conditions. CENE is the first large-scale brain bank for neurodevelopmental disorders in Hispano-America. CENE ensures that postmortem NDD samples used in research better match the world’s genetic and ethnic diversity. CENE enables and expands NDD brain research worldwide, particularly with respect to ASD and FXS, and increases the availability of brain tissue from NDDs to researchers around the globe.
CENE is the first large-scale brain bank for neurodevelopmental disorders in the United States and Hispano-America, an initiative by Dr. Martínez-Cerdeño, Professor of Pathology at The University of California, Davis (UCD) School of Medicine, in California, US. CENE thus far established a system of nodes and teams in several American countries: California-US, México, Puerto Rico, Colombia, and Dominican Republic. The California node emerged from the Brain Repository in FXS and FXTAS (Fragile X-associated Tremor and Ataxia Syndrome) at UCD. This repository was established in Sacramento by Drs. Paul and Randi Hagerman at UCD in 2000 and for which Dr. Martínez-Cerdeño is the Pathology Director since 2011, and Dr. Randi Hagerman is the clinical Director. The node in Mexico for which Dr. José Luna-Muñoz is the pathology director, was established in 2018, the node in Puerto Rico and Colombia in 2019, and node in the Dominican Republic in 2020. Refer to Nodes/Sites tab for information about specific nodes. Each node is divided in a clinical and pathology areas, and a qualified clinician and/or researcher is in charge of each of these. The pathology directors are responsible of brain extraction, tissue preservation, and tissue distribution, while the clinical directors are in charge of localizing donors, obtaining consents for donations and establishing a net of psychiatrists, psychologists, and pediatricians’ experts in ASD and NDDs in each country. Each director has a team of collaborators in their own country. CENE has a board of advisors that are word-wide leaders in postmortem autism research. Refer to our Node and Advisory Committee tab for a list of advisors and directors.
Institutional Review Board (IRB) was obtained individually for each node, following local and national laws specific to the node’s home country, before the coordination and/or collection of brain tissue and personal health information (PHI). All investigators requesting tissue ensure that all ethics approvals are met for their locality before tissue is distributed. Only a limited number of designated representatives from CENE that are involved in the procurement of tissue and medical records have access to the donor’s personally identifiable information (PII), and code and de-identify all associated records, using a unique identification number for each case. For non-designated CENE representative, and all researchers requesting tissue or records, only de-identified records are available, without access to PII.
“El cerebro es un mundo que consta de numerosos continentes inexplorados y grandes extensiones de territorio desconocido”
– Santiago Ramón y Cajal
“The brain is a world consisting of a number of unexplored continents and great stretches of unknown territory”
– Santiago Ramón y Cajal
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