Before receiving a custom research data set from NACC, researchers must agree to abide by the following rules:
- All publications, abstracts to present a poster or talk at a scientific meeting, or other releases of research results to the scientific community or to the public must be reviewed and approved by NACC before they are submitted for publication. Authors may submit their abstracts or manuscripts online through the NACC website.
- Use of the data is limited to the topic that was proposed and approved. NACC cannot ensure that each data request and resulting data set is novel to the NACC database. It is the responsibility of the researcher, not NACC, to identify a unique research hypothesis and ensure there is no significant overlap with other ongoing or published NACC data analyses. The data may not be reused for other projects or analyses, or redistributed to other investigators, without approval from NACC.
- Investigators must make no attempt to identify any individual person in the data provided. In addition, they must make no attempt to identify specific Alzheimer's Disease Centers unless approved as part of the protocol.
- Investigators must obtain any necessary approvals for the proposed research from the institutional review board at their home institution.
Rules of access
Data files provided by NACC include no variables that would reveal the identity of study subjects (except as noted below). However, files containing individual-level data may contain a variable called NACCID, a random number assigned to each subject by NACC that can be used to distinguish among subjects within the data set and to link data from different visits by the same person.
An investigator may quickly generate and view basic one- and two-way cross-tabulations via this website to obtain aggregate statistics on data sets of interest. Custom cross-tabulations may also be requested through NACC. These may be helpful, for example, to see whether there are enough subjects of a particular type to make a project feasible.