I don’t need to tell you, all anyone is talking about is COVID 19, also known as the Coronavirus. All the in-person conferences and patient events we’ve been scheduled to attend in March and April have been cancelled, and we’ll wait to see what happens after that. Not to mention schools being closed, the end of the college basketball season, the interruption of the NBA and NHL, and the delay of the baseball season. And any other event you can think of. But let me talk about what we’re doing and our patients.
Our staff all works remotely, so fortunately we aren’t putting them at risk by working. And most of the studies we recruit patients for are also remote – telephone or web cam interviews, online surveys. And while we can invite patients to in-person interviews, please keep in mind many of the patients are immuno-compromised, so they may prefer not to do that, especially a focus group. We would never want to put anyone at risk, or even make them feel as if they are being put at risk. If at all possible, I recommend until we are out of the woods that researchers keep research methods online.
Even with the cancellation of the many patient events that we attend, we are still growing our panels. We have referral programs with many patient advocacy groups, and we reward them for spreading the word and introducing patients and caregivers to join our Rare Patient Voice panels.
To everyone, please do what you can to stop the spread – the usual things that we keep hearing – keep your distance, wash your hands!
