Exceptions to Data Submission

Data collection date (interview_date) and age in months (interview_age) are required data fields in all NDA data structures. However, institutional IRBs may restrict submission of date and age variables into NDA collections. In this case, collections should follow the NDA data masking methodology, where date or age are modified by a persistent “offset” number that is generated for each subject, securely stored by the collection administrators, and not shared outside of the study. Dates may also be masked by using a common month or calendar day for all entries in a dataset. This common methodology will support appropriate secondary use of the data.

Electronic medical records will not be submitted to NDA. De-identified data derived from electronic medical records may be submitted.

Physical biospecimens will not be submitted to NDA, but reference numbers to biosamples will be submitted.

Videos and pictures of faces or other external body parts (i.e. parts that could potentially compromise a participant’s identity) will not be submitted to NDA.

Participants who do not consent to share data through NDA are not excluded from the study, but their data cannot be uploaded to NDA.