add cognitive metadata to model

[lopierra]

Start with just listing which tests were done for which participants.

Standards, from Anna Esbensen interview:

• NIMH NDA data dictionary
• ABCD for research domains
• NDAR for autism-related tests

[lopierra]

interview w/ Nancy Raitano Lee:

• SPARC, IAN, NDA could be resources for cognitive model
• would like manifest of available files for each participant, even if not in portal (like ABC-DS)
• qualitative data - agree that PI should be responsible for checking PHI.. maybe sign an attestation?

[lopierra]

interview with Liz Will:

• would like to see raw data for autism dx, etc. so they can re-assess according to their own process
• raw videos of interviews would be useful too

[lopierra]

interview w. Marie Channell:

• would like to see all DS-Connect surveys
• for questionnaires - need info about how data were entered (raw vs composite scores; how were scores computed)
• metadata for cognitive data - date measure was collected, age at assessment, participant's actual responses, demographics
• would like to search by: age, name of test (standardised), type of score. Category might be difficult for DS subfield
• need to be able to find parents/sibs in cohort builder

[lopierra]

Interview w/ Loveall-Hague

• would like to see more behavioural data
• metadata about measures - what skill it is measuring, who else published on it & what did they report, age group, inclusion/exclusion criteria --> allow users to select good measures for their own research
• as a parent of child with DS, would like to see trials that are recruiting, maybe milestones to compare child to, e.g. social determinants of health
  • simplify data for families - what did the researchers find, how might it help people with DS someday
• other suggested UI features - when was data collected (years - things like education data can go out of date as policies change); is more data expected from this cohort; incl/excl criteria is important