Welcome to PSP Blog and Registry!
I am an academic movement disorders neurologist at Rutgers Robert Wood Johnson Medical School in New Brunswick, NJ. I volunteer as Director of Research and Clinical Affairs for CurePSP. PSP Blog has some posts for technical readers and others for lay readers, each labeled as such. I hope that researchers will find this blog a valuable communications resource. An important feature is an email registry for patients. It will allow me to assist researchers, including those in industry, to recruit clinical interventional and observational studies quickly.
Basic research on tauopathies in general and on PSP in particular is moving quickly. Even translational research in PSP is ramping up, and while the Internet doesn’t need another blog, PSP-ology does need more communication and maybe some crowdsourcing.
I’m a clinician and don’t pretend to be able to evaluate the latest findings on tau templating, PERK expression or diffusion tensor imaging. But I do keep up at some level and I have many friends who are legitimate experts in all those areas and lots more. I communicate with them regularly and won’t hesitate to ask them to provide input. I’m fortunate to serve as CurePSP’s scientific director and as chair of its grant review. These roles provide unique access to some of the latest unpublished thinking and news in the field.
No, I won’t violate standard confidentiality or IP rules, in case you were wondering. But in my new role as a “journalist,” I’ll have to earn my sources’ trust rather than just assuming it by default it as I can in my day job as an academician.
PSP Blog will discuss not only new research findings, but also will report news about grant funding, new technologies, personnel developments, activities at CurePSP, and new scientific ideas that are either knuckleheaded or the greatest advance of the decade – if we only knew which. I hope that the Comments feature will allow our ideas to be kicked around frankly but respectfully. We’ll see how that goes.
The email registry for patients and caregivers is a resource for clinical research subject recruitment for both academia and industry.
If you need research subjects with PSP for an interventional or observational study:
- Send me an email (firstname.lastname@example.org) that includes a technical explanation of the project that I will keep confidential.
- Include a lay-language announcement for me to send out to the members of the Registry.
- Include a link to your own Website for me include in the email to the Registry members.
- Also include your phone number and indicate if it’s for my use only or for me to include in the email to Registrants.
- If you’re looking for controls at the same time, indicate so.
- You will be responsible for screening the responses. Unfortunately, the only data I have on the registrants is their email addresses, so I cannot target the emails geographically or by any clinical variable.
- There is no charge for this service, but an acknowledgment in any publications or slide decks would be appreciated.
Our Mission Together
Please use the Comments feature not only for feedback to me, but to propose your own ideas, to seek collaborators, core services, biospecimens or equipment. In other words, use the power of this medium to speed a cure and prevention for PSP.