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# System prepended metadata

title: Session 1 - Clinical Data Management - UK BioBank exploratory exercise

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# Session 1 - Clinical Data Management - UK BioBank exploratory exercise

## Write down 3 interesting things that you discovered while exploring the UK Biobank website


### Instructions:
On this same sheet under the line, copy and paste the below and complete with your answers:

Name:* **don't delete our stuff!!!!!!** Lucy and Rafa
**Answers:** 
1. The Biobank contains not only biological samples such as blood, urine, and DNA, but also rich imaging data (e.g., brain MRI, cardiac MRI, and retinal OCT) along with detailed lifestyle and medical records. This “multimodal” structure enables researchers to study diseases from genetic, environmental, and behavioral perspectives, providing machine learning models with diverse and high-quality features.

2.Supports causal inference and predictive modeling With its long-term follow-up data and large-scale genomic information, the Biobank allows researchers to apply causal inference techniques—such as Mendelian randomization—to identify true risk factors for diseases. For example, genetic variants can be used as instrumental variables to test the causal effect of obesity on diabetes. Meanwhile, deep learning models can be trained to predict future risks of cardiovascular or neurodegenerative diseases.




Name:Satine + Anna 
**Answers:** 
1.monitor dark web for how data is being used
2. extreme level of detail in questionaires e.g., thickness of butter/margarine spread on crackers/crispbreads, soup consumption



**Name:** Han+Yi
**Answers:** 
1.Background checks on any researcher who applies to access the data to ensure that they meet these eligibility requirements, regardless of whether they work in academia, a charity, government, or a commercial organisation. 
2.Biobank includes data on all half a million participant’s whole genomes.
3.Our data can be broken down into eight broad categories：
-Imaging data
-Biomarker data
-Genetic data
-Healthcare records
-Questionnaire data
-Physical measurements
-Demographic, lifestyle and self-reported health data
-Environmental data


**Name:** Hana
**Answers:** 
1.Thre biobank has collected detailed health, genetic and lifestyle data from 500,000 aged between 40-65.
2.Participant information is securely linked to NHS electronic health records to enable long-term health research.
3. Researchers aorund the world and scientists in different industries are able to access these data for health studies.


**Name:** Ryan and Josh
**Answers:** 
1. Around 86% of participants lived in urban areas at the time of recruitment.
2. We monitor the internet, as well as the ***dark web*** (a hidden part of the internet that can only be accessed through specialised browsers), to check how our data is being used. 
3. 3 Tier payment plan fee structure to get access to the data, with the highest charging being 9000 pounds for 3 years. However, "to help reseachers manage these costs, all researchers recieve 40 pounds of credit upon joining UKB-RAP".


**Name:** Klara and Pavi
**Answers:** 
1. Insurance companies are no longer granted access to Biobank data 
2. All area of the internet are checked, including the dark web, to prevent misuse of data
3. New data is going to be released on social interactions, focus and experience of pain.

**Name:** Adele
**Answers:**
1. Their privacy notice contains the key documents regarding collection, sharing and usage of the participants' data, for example, consent forms, ethics and governance frameworks, and etc.


**Name:** Guan-Lun, Chon, Dom
**Answers:**
1. Algorithmically-defined health outcomes and first occurrences of health outcomes: For dementia, stroke and some other conditions, they use algorithms that use data from different medical records define the target outcomes.
2. 3,000 participants, who had already taken part in earlier imaging, were re-invited during the pandemic to undergo MRI, DXA and ultrasound scans.
3. Saliva samples: around 120,000 samples; saliva's sticky texutre make it tricky to work with. New prcoesess eventually revealed in sights such as how the communitis of micro-organisms in our mouth affect our health.


**Name:** Julian and Itziar
**Answers:** 
Data base with the current and close projects done by different universities 
It has the world’s largest imaging project
To be eligible, researchers must: 
demonstrate a track record of legitimate health-related research 
be affiliated with a recognised research organisation 
operate from a country that complies with international regulations and is not subject to UK, US or EU sanctions

**Name:** Alba
**Answers:** 
returned dataset 
cloud-based analysis platform for data access and analysis, called the UK Biobank Research Analysis Platform (UKB-RAP). 

support for students projects

**Name:** Joy Emilia
**Answers:** 
1. Updated polygenic risk scores for 485,000 participants, covering 28 diseases and 25 traits 
2. UK Biobank’s imaging project was piloted in 2014 with over 7,000 volunteers scanned – a record-breaking number at that time. The main phase started in 2016, welcoming 100,000 of UK Biobank’s 500,000 volunteers to a 5-hour imaging appointment at one of four dedicated imaging centres across the country.

**Name：**jiarui and beining
**Answers:**
1.they have around 6 million conpies of the primary samples, and they are kept in tanks filled with liquid nitrogen at 196°C
2.there are more that two million onlne survey been taken
3. 

**Name:** Lisa
**Answers**:
1. Researchers wanting access to database are not allowed to operate from a country currently under sanctions from EU/US

**Name:** Chengyou
**Answers:** 
1. AI spots dementia early by analysing brain scans and movement patterns
2. Even mild COVID-19 infections change the brain
3. Genetic tests could create better depression treatment

**Name:** Kerri 🐎, Genevieve 🙈, Zoe 🫠
**Answers:** 
1. People only get average 7 hours of sleep per night and majority is more morning person than night... w ha t!
fees depending on tier of research data needed.
2. UK Biobank includes the world’s largest whole exome sequencing project, with data on over 470,000 participants available to approved researchers.
3. People who live near large, noisy airports have less healthy hearts.

**Name:** Hassan
**Answers:** 
1. No research projects have used saliva samples, since it is sticky to work with.
2. 

**Name: gong and madhurun
**Answers:** 
1. Around 86% of participants lived in urban areas at the time of recruitment.
2. Holds around 17 million containers with blood, urine, and saliva samples.
3.The freezer is big enough to park two-double decker buses inside of it.




**Name: Leo(n)😎 + Rowan 
**Answers:** 
1. From 850,000 genetic variants more than 90 million variants were predicted using statistical methods.
2. An algorithm built with ChatGPT-like technology predicts more than 1000
3. 503,317 participants within 25-mile radius of 22 centres across the UK. 10000+ variables covering biological samples, physical measures and lifestyles.


**Name:** A
**Answers:** 
1. Biobank no longer grants access to medical insurance firms for research purposes (Jan 2025), however "Approved researchers may collaborate with or receive funding from insurance companies—for example, to study disease progression. However, this does not grant insurance companies direct access to participant data. "
3. Access fees are different depending on what data you want to access
4. All researchers are checked against international sanctions lists, to ensure only ethical researchers are carrying out research in the interest of public health