Open Discussion BB&S

Question: I was talking with one of the women in the ESTAND trial and she was showing me how she uses her phone app to trigger the device. Is this something that could be done w/respect to BB&S?

It’s our vision that any of these approaches should come with a good technology that allows you to empty your bladder or your bowel or get aroused … we absolutely are working to get there.

Question: At our table we thought the research is going in the right direction, but there’s not enough of it. There seems to be a lack of expertise. We thought there should be scholarships for students if they go into these areas.

Matt: We were talking about how the community could be prescriptive .. a few years ago I tweeted Larry Flynt every day to ask for money to get sexual function restored. The peer review process requires that there be enough experts to review the papers; you can’t get peer review if you have no peers, right? And there aren’t very many experts in BB/S.

Question: We see a lot of clinical trials where the outcome is motor or sensory function. The only assessment we have is focused on that … when it comes to BB&S data, the questions we’re asking can determine what kinds of answers we get, as can the time of day and/or the kind of day you’re having.

Tracey: Remember that NIH is hosting a big conference in February to talk about the direction of research over the next ten years. They care what you all think, and this is a very big opportunity to let them know what that is.

Question/comment: It’s very strange to think about animal models for this area of research; the interplay of psychology and physiology is too intense. We have to work with people.

Stacy: Agreed.

Question/comment: Stacy, how much of the sexual function is reliant on physiological v. the psychological? Right after my injury I was still with my partner, and a lot of what we were able to do depended on me creating the mental framework that could lead to an orgasm. My erogenous zones are very different these days ..

Stacy: I have a philosophy that there’s genital orgasm and non-genital orgasm. We come with that capacity but we don’t develop it because the genitals work so well. So why are only half the people with SCI orgasmic? In answer to your question, what’s required is both. And we have to do that in human studies; it’s not going to work in rats so well.

Time for lunch!

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