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# System prepended metadata

title: TAY Data Request

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## 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.
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## 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.
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## I-Care
#### Clinical dashboard (clinician version)**
#### Cognitive dashboard (clinician version)**
** Both are uploaded to I-Care on a regular basis.
<br/>
## 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.
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## 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.
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## 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.