Setting a new standard: The UK just launched an Asthma Research Volunteer database!
Every so often, I peruse ClinicalTrials.gov, with hopes of finding a research study that I am eligible to participate in. More often than not, I’m excluded from research for one of several reasons: usually these have to do with asthma severity, or current medications, or—the most surprising when I first saw it, and surprisingly common—that I was born 10 weeks premature. I’m willing to participate in research but for one reason or another, I get excluded. These exclusion factors are, absolutely, for good reason—but being excluded when you want to do something is never a good time!
If a new precedent recently launched in the United Kingdom catches on, however, patients may be able to learn of their eligibility for clinical trials, without doing as much work, or waiting for their doctor to inform them of a study they may be interested in. In late May, a friend tweeted me a PubMed link to a study that outlines the development of the Asthma UK Centre for Applied Research’s Database of Asthma Research Volunteers 1. My immediate thought was this makes so much sense. If a patient has any interest in being a research participant, it’s far more likely that they’ll follow up on their intention if it’s easy to find studies that need participants like them! How, I wondered, has this not been done sooner?!
Here’s how it works: 1
- The database is promoted using “all media platforms possible” 1
- Individuals with asthma who wish to participate in research sign up and provide basic information to be used in assisting matching with appropriate studies
- Approved physician researchers input study information, and the database is searched for volunteers that match the needs of the study.
- When studies are added, the computer system will match volunteers that fit the criteria.
- A matched volunteer list is sent to the research study team, who then screen the demographic information of patients. When the team determines the candidate, based on basic information, fits the needs of the study, they are sent an electronic invitation through the database.
- Participant receives an invitation, and agrees to participate.
- An online self-screening tool assesses further characteristics that will deem the individual suitable for the study. The screener can be done via a Smartphone app, or using a computer.
- The participant consents to the sharing of their data with the research team electronically, and registers on the study platform.
During the sign-up process, potential participants will answer some questions about themselves and their asthma—birth date/age, gender, medication information… just the things you’d probably expect! Of course, security of volunteer information is of extreme importance, and all information is stored following maximum precautions for security at the University of Edinburgh where the Centre for Applied Research is located, just as it would be when participating in a research study.
One particular element that I like, is the database platform will—to my understanding—continue to engage volunteers (or offer opportunities for engagement, at least!) even if that participant is not eligible for a study at a given point in time. All too often, patients may sign up for something that’s “in the works” and lose interest—when the time comes that they’re needed… they are nowhere to be found because they weren’t engaged earlier! The online site and app provides information, alerts and online asthma tools, and shares other apps that may help registrants better self-manage and track their asthma. 1
Do you think the model that is being implemented by the Asthma UK Centre for Applied Research database will help more patients get involved in research? If you live in the United States or Canada, or another country where such a system does not exist, would you sign up for the database?
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