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Ciencia básica y patogénesis

Tatiana M Foroud1,2, Kelley M Faber1,2, Kaci Lacy1,2

  • 1National Centralized Repository for Alzheimer's Disease and Related Dementias (NCRAD), Indianapolis, IN, USA.

Alzheimer's & dementia : the journal of the Alzheimer's Association
|December 24, 2025
PubMed
Resumen
Este resumen es generado por máquina.

Los investigadores pueden avanzar en la investigación de la Demencia por Enfermedad de Alzheimer y Trastornos Relacionados (DEMENCIA) compartiendo datos de muestras biológicas. El Repositorio Centralizado Nacional para la Enfermedad de Alzheimer y Trastornos Relacionados (NCRAD) facilita esto a través de acuerdos y prácticas de intercambio de datos.

Palabras clave:
intercambio de datosmuestras biológicasinvestigación de DEMENCIA

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Área de la Ciencia:

  • Neurociencia
  • Investigación Biomédica
  • Ciencia de Datos

Sus antecedentes:

  • El avance de la investigación sobre la Enfermedad de Alzheimer y Trastornos Relacionados (DEMENCIA) requiere muestras biológicas accesibles y datos compartidos.
  • La prevención de experimentos redundantes y la habilitación de estudios avanzados dependen del intercambio efectivo de datos de valiosas muestras de investigación.

Objetivo del estudio:

  • Detallar el compromiso del Repositorio Centralizado Nacional para la Enfermedad de Alzheimer y Trastornos Relacionados (NCRAD) con el intercambio amplio de datos.
  • Detallar los procedimientos operativos estándar y las mejores prácticas establecidas por el NCRAD para los biorrepositorios con el fin de apoyar el intercambio de datos.

Principales métodos:

  • Implementación de acuerdos de transferencia de materiales que exigen el intercambio de datos con recursos aprobados.
  • Distribución de muestras ciegas, con la desclasificación sujeta al retorno de datos brutos a un recurso de intercambio de datos.
  • Realización de llamadas previas a la distribución para discutir los requisitos y formatos de los datos.
  • Desarrollo de catálogos en línea para la selección de muestras y la descarga de datos, accesibles después de firmar acuerdos de uso de datos.

Principales resultados:

  • El NCRAD emplea tres técnicas principales de intercambio de datos: acuerdos de transferencia de materiales, distribución de muestras ciegas y consultas con investigadores previas a la distribución.
  • El NCRAD ha desarrollado 13 catálogos en línea para la selección de muestras y el análisis de datos, mejorando la accesibilidad.
  • Todo acceso a datos y selección de muestras a través de los catálogos del NCRAD requiere un acuerdo de uso de datos firmado.

Conclusiones:

  • La dedicación del NCRAD al intercambio abierto de datos de muestras biológicas acelera significativamente el progreso en la investigación de DEMENCIA.
  • Las prácticas del NCRAD sirven como modelo para otros biorrepositorios que buscan promover el intercambio generalizado de datos en la investigación biomédica.