Abstract
INTRODUCTION: The National Alzheimer's Coordinating Center (NACC), founded in 1999 by the author, has many collaborators and contributors. NACC worked with Alzheimer's Disease Research Centers (ADRCs) to establish and maintain standardized, rigorous data collection, primarily through the Uniform Data Set. Clinical expertise was provided by the National Institute on Aging (NIA)/ADRC Clinical Task Force. Collaboration and leadership of many individuals was necessary for the content and context validity for NACC and NACC data. METHODS: This paper includes personal insights, recollections, and milestones in a casual narrative conversation. It does not chronicle exact dates of experiences nor achievements. The author mentions just a few of the many great people and forces that shaped and sustained NACC. RESULTS: The NIA, ADRCs, and NACC are a network of collaboration, communication, and worldwide data sharing. It will have lasting impact on the Alzheimer's disease and related dementias field. DISCUSSION: NACC's ≈ 1500 publications are available on PubMed by searching U01 AG016976 and U24 AG072122. HIGHLIGHTS: The first stages in forming National Alzheimer's Coordinating Center (NACC) data collection were formation of the Minimum Data Set and the neuropathology data set. The challenges in development of the Uniform Data Set (UDS) as the basic data collection mechanism for all the National Institute on Aging Alzheimer's Disease Research Centers (ADRCs) were substantial and involved all ADRCs. The critical role of the Clinical Task Force was to establish not only UDS content but to cement the overall importance of the UDS as the "cornerstone" of NACC and the ADRC program. Since 2021 there have been new informatics innovations, novel data streams and the development of the Data Front Door.