A semi-automated pipeline for fulfillment of resource requests from a longitudinal Alzheimer's disease registry.

ABSTRACT:

Objective

Managing registries with continual data collection poses challenges, such as following reproducible research protocols and guaranteeing data accessibility. The University of Kansas (KU) Alzheimer's Disease Center (ADC) maintains one such registry: Curated Clinical Cohort Phenotypes and Observations (C3PO). We created an automated and reproducible process by which investigators have access to C3PO data.

Materials and methods

Data was input into Research Electronic Data Capture. Monthly, data part of the Uniform Data Set (UDS), that is data also collected at other ADCs, was uploaded to the National Alzheimer's Coordinating Center (NACC). Quarterly, NACC cleaned, curated, and returned the UDS to the KU Data Management and Statistics (DMS) Core, where it was stored in

SUBMITTER: McKenzie KA 

PROVIDER: S-EPMC6993996 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature