Before our digital real-world studies can make any sort of impact for researchers, clinicians, or pharmaceutical companies, we need to recruit enough participants to collect a meaningful set of data. The fact that our target populations are rare disease patients and their caregivers introduces a challenge to the recruitment process: individuals living with a rare disease currently make up less than 6% of the world’s population¹.
In under 3 months, however, we have been able to recruit more than 800 rare disease patients across our app-based studies.
Rapid patient recruitment is one of the key values of a digital registry. Knowledge of the study can be spread through social media, patient advocacy groups, or by word of mouth, and the accessibility of the platform eases the process of engaging participants with the study. Our facilities largely run in-house and apps can therefore be quickly developed, localized, tested, and launched in another country or language. This in turn means that participants can be recruited from all over the world and that recruitment in additional countries is prompt.
Rapid recruitment means rapid publication output. Having an accelerated recruitment path also facilitates a study population that reflects the real world, as we can establish early on whether the recruitment process needs to be adjusted to make the sample more representative.
It is not only about recruiting as many participants from as many different places as possible, but also, crucially, keeping participants engaged with the study. The value of recruitment through Vitaccess Real™ lies not only in its speed, but also in the type of participant that it attracts. The typical consent-to-contact opt-in rate (i.e., participants who agree to be contacted about future research) for our digitally engaged cohorts sits at over 80%. This statistic is telling of the type of patients who are enrolling in these digital registries: they not only want to sign up to that particular study, but they potentially want to engage with future research as well.
For us, it is important to be directly involved in the patient community – whether for recruitment purposes, or to help maintain engagement through crafted newsletters and informative social media posts – rather than communicating through an agency, which is typical for studies like ours. We also partner with patient advocacy groups to co-create our apps, which helps to ensure that the content is as relevant and accessible to participants as possible.
The combination of our team’s expertise, our carefully designed digital studies, and our direct involvement with the community plays an important role in the recruitment and continued engagement of participants; the rare disease community, however, continues to demonstrate a unique readiness to give their time for the continued advancement of research. Without them, none of it would be possible.
To find out more about our digital real-world evidence studies or how we could help you, contact us at firstname.lastname@example.org.
By Fatemeh Amini