A research participant portal that protects participants first
A research registry serves volunteers and researchers. The volunteers come first, and every request for their data goes past people and onto the record.
Eleven years of tools for twins and the researchers who study them.
From 2012 to 2023 we designed, built and looked after TwinsUK's research pages, members' site and data access system at King's College London.
The context
TwinsUK is the UK's largest adult twin registry at King's College London. The registry depends on two groups of people. Twins give their time to visits and questionnaires. Researchers apply to use the data and samples those visits produce.
From 2012 to 2023 we designed, built and looked after the web tools for both.
It started with the research pages
In November 2012 the department had approval to rebuild the research area of its website. The old page was one long block of text. By July 2013 the area opened on an interactive diagram that split the research into omics tools and disease and ageing, with a page for each area behind it.
Two groups, each needing its own way in
The twins needed one place to keep their details up to date, answer questionnaires, see what the research found and prepare for a visit to St Thomas' Hospital.
The researchers needed to apply for data without a chain of forms and emails. The registry needed a record of every decision its committee made on those applications.
Twins got one place to sign in
Twin Zone was the research participant portal for the registry's members. A twin signed in with their study number and PIN to update their details, complete questionnaires, see their research results, meet their study team and prepare for a visit. We designed it in 62 screens between September 2016 and May 2017, built it on WordPress, and looked after it from its launch in November 2017 until 2023.
Around the sign-in we wrote the research into pages a volunteer can follow:
- The twin visit, drawn as a timeline from the booking call to receiving results, followed by the questions twins ask most.
- The Study Life Cycle, an animated diagram of how a study runs: research question, design, implement, analyse, publish.
- Behind the Science, a long read on genetics, from the Human Genome Project to epigenetics, the microbiome and metabolomics.
Researchers applied in one form, and every decision went on record
The application moved from forms and email to one system. A researcher opened an account and filled in seven sections, from the applicants and their institution to funding, ethical approval, the data or samples needed and the scientific proposal. The draft saved until it was ready. A dashboard showed every request and where it stood.
Each application went to the committee for approval, and every decision sent a PDF to the applicant and the data access manager. That PDF was the record. We built it first on WordPress, then rebuilt it as a Laravel application that checks each researcher's ORCID iD, the identifier researchers carry across institutions.
Publications since 1987 became searchable
We rebuilt twinsuk.ac.uk, the research site, in 2017 and 2018: 49 screens in two rounds. We built it on WordPress, with its own content types for staff, publications, press releases, jobs, projects and videos.
A researcher could search every publication since 1987 by year, author and keyword, and browse the data the registry holds, including the DietMetab study by metabolite and food type. Twins could register as a pair.
Two apps that reached testing, not release
In 2015 we began an app for twin volunteers: a web app, then in 2016 a native iPhone and iPad app in Swift. Twins signed in, took surveys, saw the results as charts, and followed news and events. Staff added participants and published surveys from an admin side.
Both apps were built and tested on our own staging server and were not released. The REST API we wrote for them, 23 endpoints with personal details stored encrypted, went on to serve Twin Zone.
What it came to
- Eleven years with one registry, 2012 to 2023.
- Twin Zone launched in November 2017.
- One API built for the apps and later used by Twin Zone.
- A data access process with a record of every committee decision.
- Repairs when they were needed: malware cleared in 2019, the DietMetab search rebuilt in 2020, and both sites repaired for PHP 8.1 in 2023.
The work ended when we closed our UK chapter, as the registry required a UK-registered company.
What we delivered
- Information architecture and interface design: 193 screens across eight design projects
- Twin Zone, the participant portal
- twinsuk.ac.uk, the research site
- The data access application and review system
- A REST API on WordPress, reused by Twin Zone
- A web app and an iPhone and iPad app, built and tested but not released
- WordPress maintenance and security from 2019 to 2023
TwinsUK also introduced us to TreatOA, a European research consortium coordinated at King's, whose website we built in 2013.
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