Version: 1.0.0 | Published: 8 Oct 2024 | Updated: 229 days ago
Documentation
Associated Media:
Description:
# Summary of data captured and available for analysis in BRIAN:
## Tumour Log
Details of users" condition and how it changes over time.
* Tumour Type, grade, location, status, date of diagnosis
* Historical view of changes over time
## Demographics (primary)
All BRIAN users provide the following information when signing up to the app.
* Month / year of birth
* Month / year of death (where patient is deceased)
* Sex
* Country of residence
* UK County
## Demographics (secondary)
These fields are non-mandatory so not as well populated as the primary demographics.
* Qualifications
* Job Status
* Income
* Marital Status
## Treatments & Appointments
Users can use BRIAN to track all of their health visits.
* Health visit description
* Start / End dates
* Number of treatments
* Radiotherapy dosage info
## Medications
BRIAN allows its users to set up a medication schedule and uses mobile notifications to remind users to take them.
* Schedule: medication types, start/end dates, dosage, and the schedule for taking the medication
* Reminders: reminder times, and the times logged by users for when they actually took the medication
## Wearables
Users can opt in to sharing wearable data with the app. N.B. the quantity data gathered varies by the users’ wearable device.
* Activity data: steps, distance travelled, active minutes, flights stairs climbed
* Sleep data: total sleep, light sleep, deep sleep, REM sleep, wake sleep, time in bed
* Heart data: average, min, max & resting heart rate
* Height & Weight data: height, weight, BMI
## Challenges
These small games / activities were created to capture some unique data points that could be used for analysis.
* Stability Challenge: users have to hold device one-handed and try to keep a ball in a target using very fine motor movements. Scores over time can be shared.
* Memory Challenge: users are shown a series of images one after another and are required to indicated whether the current image was the same as the last image. Scores over time can be shared.
* Speech Challenge: users read aloud a passage of text & the audio is captured. Voice clips & Azure audio analysis data can be shared.
* Selfie challenge: users take a photo of their face each day. Azure Cognizant analysis can be shared.
## Quality of Life
There are two means for users to track quality of life in BRIAN:
* QoL Check-ins; a regular check in where users record how they’re feeling physically, cognitively & emotionally, and track symptoms they’re experiencing.
* EORTC-QLQ-C30 + BN20 (Adults) and PEDSQL (Paediatrics)
## Clinical Trial History
* Record of clinical trials attended, as entered by users
## Benefits Claimed
* Record of state benefits patient is claiming, as entered by users
## Diet Survey
* An internally authored survey that gathers information on dietary behaviours in patients.
Coverage
Typical Age Range:
0-150
Provenance
Origin
Sources:
Other
Collection Situations:
Other
Temporal
Accrual Periodicity:
Continuous
Start Date:
30 September 2019
Time Lag:
Variable
Accessibility
Access
Access Rights:
Delivery Lead Time:
Not applicable
Jurisdictions:
GB-GB
Data Controller:
The Brain Tumour Charity
Data Processor:
The Brain Tumour Charity
Usage
Data Use Limitations:
- General research use
- Research-specific restrictions
Data Use Requirements:
User-specific restriction
Resource Creators:
The Brain Tumour Charity
Format and Standards
Vocabulary Encoding Schemes:
OTHER
Languages:
en
Formats:
- database
- audio
Observations
Statistical Population
Population Description
Population Size
Measured Property
Observation Date
Persons
4500
N/A
30 September 2019