It’s about time

I’ve been writing about PSP for patients and families for 30 years, and I realized long ago that what people most want to hear about isn’t my scientific musings about a new diagnostic technique or etiologic theory. They want to know about treatment, especially about clinical trials they might join.

For most of those three decades, there was little to report on that front. But in the past five to eight years, that has changed. Fortunately, has stepped into the breach starting with the FDA’s 2007 requirement that pharmaceutical companies list their trials on that public bulletin board.

But has its drawbacks for patients and families seeking a treatment trial. Searching its database on “progressive supranuclear palsy” returns a long list of projects that are mostly either observational, geographically unrealistic, fully recruited, terminated, listed but nowhere near initiation of recruitment, or on hold because of the pandemic. Yes, careful scrutiny can eliminate those, but that takes some insight into clinical research that most people lack.

I haven’t been a complete slacker on this matter. I wrote a 2018 book entitled, A Clinician’s Guide to Progressive Supranuclear Palsy, but that was frozen in time. I led the July 2021 writing, with 36 expert co-authors, of a consensus statement entitled, Best practices in the clinical management of progressive supranuclear palsy and corticobasal syndrome: a consensus statement of the CurePSP Centers of Care. It focused on available, non-specific, symptomatic management, with only vague predictions about what actual disease-specific, neuro-protective or preventive treatments might be on the horizon.

That’s why this blog will henceforth try to keep you all current on clinical trials in PSP and CBD. I’ll do this in concert with CurePSP, which will soon add such a page to its website, which the CurePSP staff and I will update as needed. I’ll get back to you on this soon.

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