By Ben Brown
Wanted to share some quick thoughts from the Treating Tourette Together summit I just attended in Minneapolis, Minn.
My first, second, third, fourth, fifth and final impressions all held up that the Tourette science community is tight-knit, clearly cares about its work and wants more and better resources for patients. Further, it wants a better, direct understanding of what the Tourette community itself wants. The Treating Tourette Together summit, funded by the Patient-Centered Outcomes Research Institute, was a convergence of scientists, providers and patients to collaborate and set a worthy agenda for future research and ultimately better offerings. It effectively lined up the medical and science crowd with the people their work affects.
Most of the discussion was of comprehensive behavioral intervention for tics, or CBIT, which has caught a lot of hope. CBIT isn't a cure-all and isn’t for everyone, but has shown to be a drug-free way of reducing tics in patients.
The Tourette Association of America has a CBIT info page breaking down how it's meant to work. Put generally,
CBIT is a non-drug treatment consisting of three important components:
Training the patient to be more aware of tics
Training patients to do competing behavior when they feel the urge to tic
Making changes to day to day activities in ways that can be helpful in reducing tics.
There's fairly limited access to CBIT providers, though, and that was a core focus for change. Potential research questions brought up at the summit sought better info on the optimal age of CBIT participants and what factors may contribute to varying levels of success among them. Is CBIT administration something we should leave only to the doctors and nurse practitioners? Or can school counselors and even parents do it? Is it most effective in-person? Or is a telehealth option (receiving CBIT sessions over a secure video connection online) just as good?
By the end of the 2.5-day summit, we'd covered a lot, and before I go much further I want to let the core TTT folks, including (the stellar) Drs. Christine Conelea and Matt Capriotti, get their much more detailed notes together. I don't want to jump ahead.
But I will say that there will be a positive impact on Tourette knowledge and options for care thanks directly to this summit and the Jagger-level people involved. I was lucky to be there.
More soon! A few photos below. Thanks so much to Drs. Conelea and Capriotti and to the Tourette Association of America for the programming and support here.
Full album of photos from the summit on Flickr.