As the largest, most comprehensive study of individuals with early-onset Alzheimer’s disease, LEADS is seeking to partner with researchers across the country. Data and biospecimens from LEADS will be shared with researchers with the goal of furthering translation of the research into knowledge, treatments, and procedures to improve human health.
LEADS uses a standard set of protocols and procedures to collect several types of data. Data is shared for free with authorized investigators through the LONI Image and Data Archive (IDA).
- Demographic information
- Clinical data – vitals, general medical and neurologic examinations, past medical history, medications, clinical diagnosis and diagnostic subtype
- Cognitive and behavioral assessments – NACC UDS cognitive and FTD batteries, AVLT, Digit symbol, ADAS-Cog, TabCat, FAQ, GDS, NPI-Q, Amsterdam IADL
- Magnetic resonance, amyloid (florbetaben), tau (flortaucipir) and glucose metabolism (FDG) PET images
- Imaging summary measures – cortical and subcortical volumetric data, amyloid PET summary measures extracted after normalization to whole cerebellum and tau PET summary measures extracted after normalization to cerebellar gray matter regions to quantify amyloid and tau PET data. FDG summary measures after normalization to pons to quantify glucose metabolic rate.
LEADS collects peripheral blood (plasma, serum, PBMC) and cerebrospinal fluid from participants. Interested investigators are encouraged to submit a data request application to use this limited resource.
LEADS collects DNA and RNA from all participants. Interested investigators are encouraged to apply to use of this limited resource.
Sharing will be facilitated in collaboration with Global Alzheimer’s Association Interactive Network (GAAIN) run by LONI. Metadata will be readily viewable through GAAIN. Specific procedures for accessing study data are still being developed.
Investigators must provide a written request specifying what type of data is being requested and detailing the plans for data analyses. Applications for data use will be reviewed by the LEADS Administrative Core and other Core Leaders.
To protect participants’ rights and confidentiality, PHI will be limited to the minimum necessary for authorized oversight before the data are shared.
LEADS Data Sharing
Acceptance of LEADS data obligates the recipient to reference the grant in any presentation or publication that may result from this research. Researchers must notify and submit their paper for pre-review by the LEADS Publication Committee if new publications or independent funding for secondary analyses result from use of LEADS data.