Sea una de las más de 600 personas que contribuyen a mejorar la vida de las personas con síndrome de Down
Ayude a combatir el Alzheimer en personas con síndrome de Down
¿Qué es ABC-DS?
ABC-DS es un estudio de investigación que sigue a adultos con síndrome de Down para aprender más sobre la enfermedad de Alzheimer. Usamos imágenes cerebrales, análisis de sangre y pruebas de memoria y pensamiento.
Más sobre nosotros
¿Qué son el síndrome de Down y el Alzheimer?
El síndrome de Down es una condición genética causada por una copia extra del cromosoma 21. Puede afectar el desarrollo físico y el aprendizaje.
La enfermedad de Alzheimer es la forma más común de demencia. Afecta la memoria, el pensamiento y la conducta. La enfermedad empeora con el tiempo, pero los cambios en el cerebro pueden comenzar muchos años antes de que aparezcan los síntomas.
¿Por qué estudiamos el Alzheimer en personas con síndrome de Down?
¿Sabía que el 70% de los adultos con síndrome de Down desarrollarán Alzheimer en algún momento de su vida? Casi todas las personas con síndrome de Down presentan cambios cerebrales relacionados con el Alzheimer antes de los 40 años. Esto debe cambiar. La mejor manera de hacerlo es comprender mejor, detectar, tratar y prevenir el Alzheimer en la comunidad con síndrome de Down.
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El proceso de participación
Visite uno de nuestros centros de investigación para un examen médico, actividades de memoria y pensamiento, imágenes de su cerebro y una muestra de sangre. Su acompañante de estudio también responderá algunos cuestionarios.
Regresará para visitarnos a los 16, 32 y 48 meses, y más adelante tendrá otra visita similar.
Cómo participar
Inscripción al estudio y consentimiento
Asista a visitas en uno de nuestros centros de investigación.
Su acompañante de estudio responderá cuestionarios en cada visita.
Regresará para visitarnos a los 16, 32 y 48 meses, y más adelante tendrá otra visita similar.
Recursos para investigadores
El estudio ABC-DS recibe manuscritos, artículos, resúmenes y presentaciones basados en los datos y materiales del estudio. Haga clic aquí para obtener más información sobre cómo solicitar acceso a los datos.
Más información para investigadores
Noticias y publicaciones
Leer más noticias y publicacionesABC-DS training: Session 1: Longitudinal data analysis, biomarker harmonization methods, and data access in the ABC-DS Study
We're excited to upload the training our very BDM Core did earlier this year on longitudinal data analysis, biomarker harmonization methods, and data access in the ABC-DS Study.
Read MoreBrain Donation | One Woman’s Gift to the Next Generation with Down Syndrome
In this heartfelt podcast episode, Molly shares her family’s experience with brain donation, and its incredible importance for Alzheimer's and Down syndrome research.
Read MorePuerto Rico to become a site for The Alzheimer Biomarker Consortium – Down syndrome
The Alzheimer Biomarker Consortium–Down Syndrome (ABC-DS) is partnering with researchers in Puerto Rico to build a local research site and increase Hispanic representation in Alzheimer’s disease studies involving adults with Down syndrome. As part of the effort, five Puerto Rican families will participate in research activities in Wisconsin while infrastructure is developed to eventually conduct the studies on the island. Check out the article to learn more.
Read MoreABC-DS Through the Lense of a Participant and Sibling
Check out these articles written by an ABC-DS participant David Egan and his brother Marc Egan (a sibling control) at the University of Pittsburgh!
Read MoreAlzheimer’s TODAY June Issue Features ABC-DS Investigators!
Check out page 6 of the June Issue of Alzheimer's TODAY to see an article written by our own Dr. Elizabeth Head and Dr. JR-Jiun Liou!
Read MoreWoman Donated Her Brain to Science—Alzheimer’s Experts Shocked by Discovery
An ABC-DS participant at the University of California - Irvine donated her brain upon passing away in her 60s. Brain donation is incredibly important to our work, and this case is a great example. The participant’s brain had all of the neuropathological markers expected with a diagnosis of Alzheimer’s disease. Even with all of the hallmark neurological signs of Alzheimer’s, this participant was cognitively stable her entire life! This woman defied the odds and by donating her brain has given us the opportunity to learn more about protective factors. Check out the article to learn more.
Read MoreWho Really Discovered the Cause of Down Syndrome?
In 1959 the first findings of a genetic cause of Down syndrome were published. French scientist Jérôme Lejeune has long been credited for the discovery of trisomy 21. Many years later, Marthe Gautier, made it clear that she was the true discoverer of trisomy 21. The article, “Who Discovered the Cause of Down Syndrome”, describes how Gautier had the ability to culture cells to find this breakthrough discovery. The article goes on to describe how Lejeune had access to photograph the results of Gautier’s study. Instead of just photographing them, he took the photographs to their superior and quickly published the results as the first author with Gautier as the second author (and with her name misspelled). For many years, Lejeune was the face of the discovery of trisomy 21, until Gautier herself advocated to be recognized as the true discoverer. As we open Women’s History Month and approach World Down Syndrome Day on March 21, we want to celebrate Marthe Gautier and her incredible discovery. Click 'Read More' below to read the entire article!
Read MoreNew Newsletter from the University of Cambridge!
Our team from the University of Cambridge has a new newsletter to share with you!
Read MoreNew Lifestyle Newsletter!
Check out our newest Lifestyle newsletter! This edition is all about the importance of sleep and how you can improve your sleep.
Read MoreZoom Caregiver Support Group: Down’s Syndrome & Dementia
Build a support system with people who understand via a Caregiver Support Group for caregivers of those caring for someone with Down Syndrome and Dementia/Alzheimer's Disease.
Read MoreJanuary Healthy Diet Resources
Information from our ABC-DS calendar for the month of January the theme is HEALTHY DIET
Read MoreDoes Employment Complexity Promote Healthy Cognitive Aging in Down Syndrome?
In adults with Down syndrome, lower employment complexity is associated with memory decline and symptoms of Alzheimer’s disease.
Read MoreLa Movida Madison
Our University of Wisconsin-Madison Study ABC-DS study team joined La Movida Madison
Read MoreComparison of amyloid burden in individuals with Down syndrome versus autosomal dominant Alzheimer’s disease: a cross-sectional study
Amyloid PET changes were similar between people with autosomal dominant Alzheimer's disease versus Down syndrome
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