Premier Insight
Rare Disease

Premier Insight 249: A High Unmet Need that No One Wanted to Talk About

What do you do when patients are too embarrassed to talk about what’s wrong with them? It was a trial for fecal incontinence, and patients wanted help – they just didn’t want to admit it. We needed a new outreach and recruitment process, so we tried radio, outdoor, and subway. We rigorously tracked what worked and what didn’t. Finally, it struck us.

A little privacy, please

Recruiting “hidden” patient groups for rare disease studies is always challenging, and flexibility is the only constant. Traditional media outreach didn’t yield the recruitment levels we needed, so we experimented and found that success depended our becoming a thoroughly modern media company as well as a flexible, open-to-anything CRO.

Most people seeking help for fecal incontinence are shy about advertising that fact, so we turned to the “private” medium of Google AdWords – those ads that pop up when you search the web. A single click brought potential trial participants to our website, where they were asked three simple questions – in total privacy – to prequalify. Then they contacted us, rather than the other way around, and we closed the deal in a three- to five-minute phone call.

And we didn’t lose a single patient in the process

Of course, it wasn’t all that simple. We conducted the study in nine European countries with different healthcare systems, languages, and cultures. That required a customized approach for each audience, but that’s all in a day’s work for a global research company. In the end, it was a big success that demonstrated the best of Premier Research: our ability to find unexpected solutions that help pharma and biotech companies transform great ideas (like the autologous skeletal muscle-derived cells in this study) to life-changing realities.

Nothing gratifies us more than helping customers change medicine in ways that bring new hope to patients who formerly had no place to turn.