For Researchers
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.
Available Data
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 LEADS Data Sharing Committee.
Clincial
- 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
Imaging
- 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.
Genetics & Biospecimens
LEADS collects peripheral blood (plasma, serum, PBMC), DNA, RNA and cerebrospinal fluid from participants. The schedule of visits and sample collection differs between subject groups. See NCRAD website for the exact schedule of events. Interested investigators are encouraged to submit a data request application to use this limited resource.
A cost recovery fee will be charged for sample preparation, processing, and transfer by the Genetics and Biorepository Core.
Data Requests
LEADS Data Sharing
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 Data Sharing Committee and approvals are contingent upon selection of applicable data variables. Datasets will be tailored to the specific needs described in the application.
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 and Publication Policy
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.
