The PREPARE Study

It’s been nearly a year since our last blog post, and what a year! At this time last year, hospitals and clinics were just beginning to get a handle on the overwhelming challenges of the COVID-19 pandemic. We didn’t attempt to recruit families during those early months. One thing we did instead: adjust our study plans to accommodate more telehealth and remote patient care.

Telehealth

It’s no secret that the use of telehealth has exploded over the past year, and has been tremendously important in many areas of medicine. During the pandemic, many obstetric clinics stepped up quickly, implementing telehealth in order to limit their pregnant patients’ potential exposure to COVID-19. Clinics found that even “high-risk” prenatal care could benefit from telehealth. And a significant portion of prenatal genetic counseling appointments transitioned to telehealth, as having this educational conversation on the phone or via videoconference offered a clear opportunity to reduce exposure for both patients and providers.

Together with our clinical sites, we revised our recruitment plans to mail study packets to patients’ homes, and to have coordinators at each site help health care providers keep track of whether and how those packets had been offered to their patients. This required approval from our ethical oversight boards at each site, since their job is to protect patients and make sure studies are following research regulations. We may never know whether these changes help or hurt our recruitment, but it was clear that, like any study, we had to adapt to this unusual “new normal.”

Something else that’s become clear is that telehealth is likely here to stay. We realized that we needed to make permanent changes to accommodate this new situation, because many clinics would continue to provide care in this way in the future. Although what this means for the future of studies like ours is unclear, telehealth is great for frequent, brief check-ins, which are common for pregnant patients. It can increase access to genetic counseling for patients at clinics without their own genetic counseling staff. And best of all, it can help reduce the burden of health care for patients and families who don’t have a car, live far from the clinic, or have childcare or eldercare needs.

We made other adjustments over the past year, which we can share with you in future posts. But we’re happy to say that we’re still plugging along and learning a lot about how families prepare for a child with a genetic condition.