SUBMIT your abstract or manuscript to NACC for the required review
For questions not addressed here, contact NACC (firstname.lastname@example.org).
Under those circumstances, the investigator should work with NACC to create a list of tissue/data available at each Center. Next, NACC consultants will help the investigator draft a memo to the Clinical Core Leaders or other appropriate contact persons at the Centers of interest. All communication to Centers should clearly state that the request is not a NACC initiative and that Center participation is entirely voluntary. It is also important to note that NACC has a system of creating STUDYIDs to prevent NACCID-PTID linking that could result in an IRB violation.
NACC routinely provides advice and guidance about the availability and interpretation of data in NACC data sets. A scientific liaison at NACC is assigned to each project. Through this liaison, investigators can seek advice about analysis and interpretation as the project proceeds. Data analysis for most projects, however, occurs at the investigator's home institution. On request, NACC can also provide statistical and methodological consultation.
By mutual consent and subject to staff time constraints, NACC scientists can sometimes take on a larger role, including hands-on data analysis, direct collaboration, and co-authorship. Those arrangements are made on a project-by-project basis and are normally initiated by the investigator.
For more information, please see Processing your request.
For most tests in the UDS Neuropsychological Battery, only the total score is captured in the UDS. Subscale scores are also recorded for the Mini-Mental State Examination. For further details, see UDS Form C1 and the corresponding UDS data element dictionary entries.
Many ADCs do retain item-level neuropsychological test results, and access to the item-level data can be sought as described under Question 1 above.
Dr. Sandra Weintraub's article containing this information is available here. Dr. Weintraub warns that the posted summaries of test scores for non-demented subjects should not be treated as formal "norms." (All data were developed for the more detailed paper by Weintraub et al. in Alzheimer's Disease and Associated Disorders).
Yes. For autopsied IDs, the result is included in the Neuropathology (NP) Data Set. NACC also collects APOE data from the ADCs for subjects who have not been autopsied. Currently, APOE data are available for approximately 60 percent of UDS non-autopsied subjects. These values may be requested by investigators through either a data request or a table request.