How Virginia Commonwealth University Accelerated Data Collection from Twins for Long-COVID Study - Vibrent

How Virginia Commonwealth University Accelerated Data Collection from Twins for Long-COVID Study

Background

There is increasing evidence that some individuals suffer long term symptoms after recovering from Coronavirus Disease 2019 (COVID-19) infection. The term ‘long COVID’ was coined to refer to a variety of symptoms affecting different organs reported by people following a COVID-19 infection.

Twin360 is a research effort by scientists at Virginia Commonwealth University (VCU) who wanted to get the full picture of the impact of COVID-19 on the health of twin families. Twin360 analyzed long-term symptoms of COVID-19 that have been reported ranging across depression, exercise intolerance, weakness, and neurologic symptoms.

Studying twins who had the virus, as well as those who did not, is a powerful way to understand the impacts of COVID-19 and improve our ability to support those impacted. 

vcu_logo

Cohort

The Twin360 project needed to recruit a large number of participants quickly, and the study primarily used the Mid-Atlantic Twin Registry of Virginia Commonwealth University (MATR). MATR was established in the 1970s as a resource for scientists to better understand the genetic and environmental influences impacting human health and disease—through conducting research with twins.

Twin360’s research cohort recruited twins identified as having electronic health record information in the VCU health system. The study compared responses to surveys from participants with data from their electronic health record, if they agreed to provide access to that information through informed consent.

Twin360 By the Numbers

0 +
Twins registered
0 %
eConsent completion
0 %
Survey completion rate

Approach and Methods for Assessment and Data Collection

The Twin360 study aimed to examine the role of genetics vs. environment on acute and long-haul symptoms of COVID. This was done by comparing acute and long-haul symptoms between monozygotic or identical twins, who share 100% of their genes to dizygotic or fraternal twins, who only share 50% of their genes.
With the focus on COVID-19, a rapidly spreading infectious disease, it was important for the study team to recruit a large, diverse participant base very quickly. To achieve this, the Twin360 team decided to collaborate with Vibrent Health to develop a study infrastructure to speed up recruitment, eConsent and data collection. As part of this collaboration, Vibrent launched a participant portal for Twin360 , built on Vibrent’s Participant Experience Manager.
The study used the following methods of data collection:

Participant Portal

Twins wishing to participate could create an account on the participant portal for the Twin360 study. This portal, available as a web or mobile application, runs on Participant Experience Manager, and provides participants access to informed consent, data collection, their user account details, genomic results, and more information. The study used the participant portal as one of the primary means for data collection.

Informed eConsent

Through a series of text screens and videos hosted on the participant portal, the Twin360 study educated participants about participating. Agreement to participate was documented with digital signatures. The eConsent software automatically emailed participants a copy of the IRB-approved PDF consent form with their added signatures, and participants could withdraw their consent at any time. 

Participant-Generated Data & Surveys

The study obtained extensive health information from participants through surveys, also ran through the participant portal, including:

Electronic Health Record Data

The Twin360 study also collected participant electronic health record data (EHR) and linked them to survey and biospecimen data for use in a broad range of research. EConsent for this data collection was processed through the participant portal, running on Vibrent’s Participant Experience Manager.

Recruitment and Engagement

The Twin360 study team selected 5,588 adult twins who had already consented to re-contact from the MATR for outreach. The study staff used multi-modal communication to drive the twins to the Twin360 study platform, run on Vibrent Health’s Participant Experience Manager platform.

Email and SMS recruitment

Twins from the registry were sent recruitment emails and text messages.

Multi-modal communication

A pilot subset of 309 twins were selected for phone calls and, in addition to emails/texts, they received:
Within a 6-month period, the MATR recruited over 1,300 twins to enroll in the Twin360 study and over 400 pairs of twins completed the Twin360 survey. At study completion, there were over 1400 participants, 90.4% of whom completed the survey.

Research Impact

Studying twins who had the virus, as well as those who did not, is a powerful way to expand our knowledge of COVID-19 and ideally improve our ability to support those impacted. The Twin360 project provided a pathway for twins to take part in this innovative and important research, and the research team selected Vibrent’s Research Cloud and Participant Experience Manager products to power the study.
“The virtual nature of digital research, utilizing mobile devices or computers from anywhere, allows us to engage twins for decentralized studies around the globe,”
Dr. Judy Silberg, VCU Scientific Director of Mid-Atlantic Twin Registry
Twin360 utilized the Mid Atlantic Twin Registry (MATR), a registry of over 55,000 twins, to survey twins on COVID infection across twins and development of long-term symptoms. This assisted in understanding why some of those infected with the virus experience long-term or recurring symptoms or sometimes develop brand new symptoms months later. 
Twins were studied using the following methods:

More to read