TAY Data Request

## PIs/Students ### Overview - A new data request for referral or analysis purposes requires approval from the project leads and the steering committee. - Requests for updated data sets (i.e., identical variables with additional records) do not need approval. - All request records: https://edc.camhx.ca/redcap/redcap_v14.0.16/DataEntry/record_status_dashboard.php?pid=9827 - Request link: https://edc.camhx.ca/redcap/surveys/?s=TRYEMHNEM4WLYR8R ### Data Types #### 1. Referral - Eligibility for each study (e.g., NAC, DEW) is determined, and eligible cases are referred to other study RAs for further action. #### 2. Analysis - Requests for individual data to support posters, presentations, manuscripts, grant applications, etc. ##### Examples - Dr. Felsky’s students performing SNF analysis. Dr. Diaconescu’s lab conducting model-based analyses to test whether trial-by-trial precision-weighted PEs correlate with EEG amplitude fluctuations over time. Dr. Dickie's request for Brain Age analysis for SURP Research Day. #### 3. Study Overview or Progress - Requests for data related to recruitment and assessment progress or completion rates. ##### Examples - Monthly recruitment numbers to project future sample size in grant application. - Number of participants who provided blood samples at multiple time points for the blood-based biomarker CIHR grant. #### 4. Process Revise - Requests for internal data quality checks or protocol revisions. ##### Examples - Evaluating the average time spent on each assessment to assess participant burden and consider adding new instruments. - Dr. Courtney’s request for consensus notes and disorder rating information to identify discrepancies across time points and revise the decision tree for more consistent ratings. ## Participants #### Cognitive dashboard (participant version) - Participants can consent to receive this during their cognitive visit. - Sent directly to participants on a regular basis. #### MRI Images (NIfTI) - Includes T1 images, Papaya viewer files and a README file with a disclaimer. - Shared upon request; no approval required. #### Clinical and Detailed Cognitive Results - Includes clinical dashboard (clinician version) and cognitive dashboard (clinician version). - Shared upon request; no approval required. #### Other Research Data - Some examples include RSA raw files (mwi, mwx), EEG raw rest/task files (bdf). - Shared upon request, provided responsible PIs have previously approved data release. For instance, Andreea approved the release of EEG files. - A cover letter with a disclaimer is shared along with the research data. ## I-Care #### Clinical dashboard (clinician version)** #### Cognitive dashboard (clinician version)** ** Both are uploaded to I-Care on a regular basis. ## Concussion TAY03 Sub-study #### Matched Control Candidates - A list of TAY01 participants who may serve as suitable matched controls for concussed participants. - Includes details such as age, assigned sex at birth, most recent MRI date, diagnosis, etc. - Provided directly to Maria (TAY01/TAY03 RA) upon request. - Shared as a Excel file located on the T: Drive. ## YouthAI Study - Contact information of consented participants was shared with Stella (RA of YothAI) for recruitment. - Demographic data collected in TAY was shared for those who enrolled into YouthAI. - Demographic data is shared as a password-protected Excel file via SFT. ## Other Research Study - TAY02 PET Sub-study - Data is automatically extracted into the PET study in data mart. - SYNAPSIS - Data of clinical assessments - Paper souce document is photocopied and REDCap data is shared via Excel files.