In 2017, CurePSP created a network of 30 academic medical centers with special expertise in PSP, CBD and MSA. They’re called the “CurePSP Centers of Care” and are the equivalent of what many other medical non-profits call their “centers of excellence.” Of the 30 sites, 28 are in the US and 2 in Canada. Each site is directed by a neurologist specializing either in movement disorders or cognitive/behavioral neurology with a record of excellence and achievement in at least one of the three disorders, and with a certain minimum patient flow, community involvement and availability of other relevant professionals such as physical therapists, speech/swallowing therapists and neuropsychologists.
In 2018 and 2019, its members collaborated on a consensus paper summarizing the latest in the management of PSP and CBD. It was published in 2020 in an open-access journal, and you can download it here. It’s written for physicians and other professionals, but the language is accessible to the educated layperson. You might consider sending copies to your own clinicians.
But that’s old news. What’s new is that the CoC program has just awarded its first set of grants, totaling $81,000. The rules are that only CoC sites are eligible to apply and that each project must be a collaboration of at least two sites. The subject matter has to be the quality, accessibility and equity of care. It’s not for lab research or drug trials, but each project does have to include some sort of measurable, publishable outcome.
Here are the first year’s grant awardees:
- The University of Chicago, Northwestern University and Rush University will produce ten live, on-line, hour-long educational sessions for patients and their families and caregivers covering many aspects of PSP, CBD and MSA. The presentations will be recorded and made available subsequently. Participants will be tested on the material before and after the sessions.
- The centers at Johns Hopkins University and at the Harvard-affiliated Massachusetts General Hospital will compare three different methods of improving access to care at their facilities. They will enroll a total of 30 patients with PSP, CBD or MSA. Each will receive either an internet-enabled tablet for tele-neurology visits, free transportation to their neurologist’s appointments, or free parking there. At the start and after six months, the patients and caregivers will complete surveys assessing overall disability, emotional state, stress level, general well-being and level of relevant medical knowledge.
- The University of Pennsylvania and University of California San Diego centers will assess end-of-life care preferences among White and non-White individuals with PSP, CBD and MSA. Fifty patients and their caregivers will be invited to participate and ten to 15 are expected to accept. They will receive a survey called “Attitudes of Older People to End-of-Life Issues” and will participate in hour-long focus groups of two or three patients each. The analysis will compare White with non-White participants in order to gain insight into racial differences affecting this highly culture-driven set of attitudes.
Not your average set of neurology research projects, right? I’ll report the results to you in a year. The Centers of Care plans for another set of projects in late 2023.
Disclosure: I helped organize CurePSP’s Centers of Care program in 2017 and I continue as a member of the CoC’s Steering Committee and as a member of the ad hoc committee evaluating grant applications.