Has Anyone Enrolled in the Peripheral Neuropathy Research Registry

Posted by runnergirl @runnergirl, Aug 11, 2022

Hi All,
Have any of you enrolled in the Peripheral Neuropathy Research Registry? If so, was the process easy for you? https://www.foundationforpn.org/research/research-registry/

It's too bad that they don't allow doctors from outside the consortium sites to perform the diagnostics and submit info to the registry data. In other words, treat this program the same (or similar to) other types of research studies. It seems they would get many more applicants.

Interested in more discussions like this? Go to the Neuropathy Support Group.

John, Volunteer Mentor | @johnbishop | Aug 11, 2022

I looked into enrolling but I don't live close enough to visit any one of the consortium locations sponsoring the study with the Foundation for Peripheral Neuropathy.

"How can I enroll in the Foundation’s PNRR?
There are seven (7) consortium sites for the PNRR: Johns Hopkins University (Baltimore), University of Kansas Medical Center (Kansas City), Mount Sinai Medical Center (New York), Northwestern Medical Faculty Foundation (Chicago), University of Utah (Salt Lake City), Washington University School of Medicine (St. Louis) and University of Michigan (Ann Arbor). To enroll in the PNRR you must meet the inclusion criteria: at least 18 years of age; diagnosed with Diabetic Peripheral Neuropathy, Chemotherapy-Induced Neuropathy, HIV/AIDS related Neuropathy, or Idiopathic Neuropathy; be seen at one of the consortium sites."

I don't think it would work very well as a "controlled research study" if outside doctors were performing the diagnostics. Not sure they could verify that any outside site was collecting the data or doing the research according to the specifics of the study...just thinking out loud. I've participated in several studies at Mayo Rochester not related to neuropathy and was hoping Mayo would have been a partner with this one but it wasn't.

If I lived within an hours drive, I would sign up in a heartbeat.

runnergirl | @runnergirl | Aug 12, 2022

If doctors/staff were trained in how to conduct the evaluation, and had site coordinators, then it could be done. Similar to other research studies - it's just all about funding. They'd need big corporations to sponsor such a study, as opposed to just the foundation.

Same here, @johnbishop - if I lived closer to a site I would apply.