When clinicians come up with good ideas about treatment, they can go back to the registry, and contributing members can test their theories on treatment and look further at treatment trends, new instruments, and new medicines. It’s not the registry itself that does all of this, but it’s the trickle-down effect of the registry that allows the science to move forward. We’ve really made a difference in the lives of these children and their families. —Craig Derkay, MD
Explore This IssueNovember 2019
The benefit of having an RRP registry is that it identifies the location of affected patients. “When clinicians come up with good ideas about treatment, they can go back to the registry, and contributing members can test their theories on treatment and look further at treatment trends, new instruments, and new medicines. So it’s not the registry itself that does all of this, but it’s the trickle-down effect of the registry that allows the science to move forward. We’ve really made a difference in the lives of these children and their families.” Dr. Derkay added.
Auditory Implant Initiative
The idea for a cochlear implant registry started in 2012. “It took us a while to get the idea and to build it, but we have been collecting data since 2015, and right now we have about 8,000 patients in our database,” said Jed Grisel, MD, of Texoma Hearing Institute in Wichita Falls, Texas, founder of the Auditory Implant Initiative (Aii).
The Aii focuses on clinical research and quality improvement. “We developed our own software application [HERMES] to allow cochlear implant centers to track their patients’ progress, providing clinical value that clinicians can use in their practices,” said Dr. Grisel.
In order to access the software, the clinics have to agree to allow the deidentified data to be used for research. “We give feedback to the clinics of how they’re doing, but also we use that data to conduct research studies that can help push the cochlear implant industry forward,” he said. For example, the Aii team was able to show that older adults, those 75 years and older, do as well with a cochlear implant as their younger counterparts (Otol Neurotol. 2017;38:e405–e412). “If the patient is healthy enough to undergo surgery, age is not an indicator of worse success with a cochlear implant, which is meaningful,” Dr. Grisel added.
Dr. Grisel and his colleagues are also conducting a study to determine whether type of insurance predicts outcomes with cochlear implants. “Private insurers, like Blue/Cross Blue Shield, have different criteria for cochlear implants than Medicare, which is more stringent and waits until the patients has worse hearing. We found that Medicare is a risk factor for doing worse with a cochlear implant,” he said.
“Because the type of data that we collect is very unique and specific, it cannot be extracted from electronic health records [EHRs]. We had to create our own forms, and people have to manually put the data in, which is good because we can get more robust and detailed data and answer more specific questions. The downside is convincing clinics to use the database; that has been a challenge,” Dr. Grisel said.
The registry is funded by a combination of industry support and private funding. “This has been a big barrier to creating registries. We all think the idea of registries is really great, but the important question is, ‘If you build it, who is going to pay for it and how is it going to be sustainable?’” he noted.