5 countries (3 EU, 2 LATAM) · Prurigo Nodularis
A biopharmaceutical company was preparing for a Phase 3 clinical trial in prurigo nodularis, a rare and debilitating skin condition. Trial recruitment in rare diseases is notoriously difficult: patients are geographically dispersed, disease awareness is low, and the burden of participation can outweigh perceived benefits. The company needed to understand the barriers to recruitment, retention, and participation across five countries in Europe and Latin America.
Merakoi partnered with Sailaja, a patient expert living with prurigo nodularis and the founder of PN International, to co-design the research. Sailaja did not simply review the discussion guide — she co-led its development, drawing on years of community engagement to shape questions that would surface the real barriers patients face. The research covered three EU countries and two LATAM markets, with patients sharing their experiences of diagnosis, treatment-seeking, and attitudes toward clinical trial participation.
The project identified key motivators and logistical burdens that the clinical team had not anticipated. Insights around travel burden, time commitment, language accessibility, and communication preferences directly informed strategies to reduce participant burden and improve how the trial was communicated to potential enrollees. The patient-led approach meant the company heard not just what patients said, but what they meant — the emotional and practical realities behind the data.
“Having the patient expert co-lead the research is something that I think is very valuable that I haven’t seen done in any of the other engagements, to be honest.”
“It quickly became obvious to me with each interaction with various team members that this is an organization that really cares about patients.”
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