Longitudinal Harmonization and Analysis of Alzheimer’s Disease and Related Dementias (AD/ADRD) (CIT/SAS)

Project Point of Contact: Matthew McAuliffe, Chief, SAS

Goals and Objectives: Goals are to (1) increase transparency, scientific quality and collaboration through improved public access to the aging and AD/ADRD cohort’s descriptive information, (2) assist the research community in identifying and accessing population-based resources for research in aging and AD/ADRD, and (3) develop a pilot cohort database of four longitudinal studies, in the Biomedical Research Informatics Computing System (BRICS - https://brics.cit.nih.gov/ ) data science platform. Studies:

  • Health, Aging and Body Composition (Health ABC) Study
  • Minority Aging Research Study (MARS)
  • Health and Retirement Study (HRS)
  • Study of Osteoporotic Fracture (SOF)

(4) Develop BRICS applications/tools to analyze the data

Significance: The mission of the NIA, in collaboration with CIT, is to promote and improve the health and well-being of older people. To this end, this collaboration supports genetic, biological, clinical, behavioral, social, and economic research on aging. Efforts will foster the development of research and clinician scientists in aging and AD/ADRD; provide resources for aging and AD/ADRD research; disseminate information about aging, AD/ADRD and advances in research to the public, health care professionals, and the scientific community, among a variety of audiences.

Description: The NIH Center for Information Technology, Office of Scientific Computing Services (CIT/OSCS) has developed a data science platform that supports end-to-end lifecycle support of research called Biomedical Research Informatics Computing System (BRICS). BRICS was developed to support NIH efforts with data sharing (i.e. making data Findable Accessible, Interoperable, and Reusable (FAIR)), in multiple disease-focused research programs. Seven service modules are integrated together to provide a collaborative and extensible web-based, cloud enabled environment. The modules—Data Dictionary, Account Management, Query Tool, Protocol and Form Research Management System, Meta Study, Data Repository and Globally Unique Identifier —facilitate the management of research protocols, to submit, process, curate, access and store clinical, imaging, and derived genomics data within the associated data repositories. Multiple instances of BRICS are deployed to support various biomedical research communities focused on accelerating discoveries for rare diseases, Traumatic Brain Injury, Parkinson’s Disease, inherited eye diseases and symptom science research. No Personally Identifiable Information (PII) is stored within the data repositories. Digital Object Identifiers (DOI) are associated with the research studies. Reusability of biomedical data is enhanced by Common Data Elements (CDEs) which enable systematic collection, analysis and sharing of data. The use of CDEs with a service-oriented informatics architecture enabled the development of disease-specific repositories that support hypothesis-based biomedical research. BRICS will provide an essential data coordination and sharing tools for the NIA research community through the use of modules that will enable the development a pilot database of NIA’s longitudinal studies.

The mission of the NIA, in collaboration with CIT, is to promote and improve the health and well-being of older people. To this end, this collaboration supports genetic, biological, clinical, behavioral, social, and economic research on aging.  In addition, this collaboration will foster the development of research and clinician scientists in aging and AD/ADRD; provide resources for aging and AD/ADRD research; disseminate information about aging, AD/ADRD, and advances in research to the public, health care professionals, and the scientific community. The NIA’s Data Sharing Working Group will also support this effort and seeks to synergize and facilitate collaborative science, while ensuring appropriate protections for research involving human data oversight of research conduct, data quality, data management, data sharing and data use. 

Data set(s) involved: Studies/data sets:

  • Health, Aging and Body Composition (Health ABC) Study
  • Minority Aging Research Study (MARS)
  • Health and Retirement Study (HRS)
  • Study of Osteoporotic Fracture (SOF)
  • Aspirin in Reducing Events in the Elderly (ASPREE)

Anticipated outcomes of the project: Harmonization of 5 datasets over 3 years.

To support researchers with the development of tools used to analyze and visualize the data to help them better understand AD/ADRD.
Publication of results of the harmonization effort.

Required skills of the DATA Scholar: Understand data science concepts - for example the use and application of Common Data Elements (CDEs)

Ability to write basic Python and/or R tools.

Expected/preferred length of DATA Scholar appointment: 1 year.

Expected/preferred time effort commitment of the DATA Scholar: Part time (50-99%)

Remote work preference: 100% remote allowable

ICO support: Work with BRICS team members - developers and data scientists.

Additional activities: Attend meetings with NIA. Participate in NIH working groups as appropriate.

Career or professional development opportunities: Learn about advanced and applied data science techniques.

Participate in NIH working groups as appropriate.

To apply to this or other DATA Scholar positions, please see instructions here: datascience.nih.gov/data-scholars.

This page last reviewed on April 17, 2023