PSP Research Study- NIH-Funded and Parkinson’s Institute is a Site

I just received this email from the Society for PSP (in Maryland) about an important NIH grant given to Dr. Irene Litvan, one of the top researchers in the US on progressive supranuclear palsy. One of the eight sites is The Parkinson’s Institute ( in Sunnyvale. The site coordinator there is our friend Dr. James Tetrud, a neurologist with wide knowledge of PSP. (He spoke at the Society’s recent PSP Family Conference. He mentioned the arctic ground squirrel. Most of you received an email from me about that.)

If you are interested in participating in this PSP research study, please contact Whitney Rogers, the Clinical Coordinator for the main study and for the University of Louisville site in particular. Her contact info is: 502-852-4612 or [email protected].

I have just spoken with Whitney to get some general info; she is very nice. She explained that every person with PSP who wants to be involved in the study needs to bring with them two controls. The controls should: not have PSP, not be a blood relative, and be similar in age to the person with PSP (plus or minus 5 years). One control must be the same gender as the person with PSP; this is usually an in-law. The other control can be a different gender as the person with PSP; this is usually the spouse.

Please let me know if you do contact Whitney and run into some issues that the rest of the group should know about. Also, I’d appreciate knowing who eventually signs up to participate in this study!


PS. The “Mayo Clinic” mentioned below is the one in Jacksonville, FL.

Subject: NIH Grant to Irene Litvan
Date: Mon, 22 May 2006 13:10:25 -0400
From: CurePSP
To: Support Group Leaders

Movement Disorder Program Awarded Novel NIH Clinical Research Grant to Study Rare Neurodegenerative Disease

Dr. Irene Litvan, Raymond Lee Lebby Professor of Neurology and Director of the Movement Disorder Program has been awarded a $3.4 million NIH grant to study the genetic and environmental risk factors for progressive supranuclear palsy. Progressive supranuclear palsy (PSP) is the most common atypical parkinsonian movement disorder. Dr. Litvan will lead a team of movement disorder specialists from 8 sites across the country (Baylor, Case Western, Emory, Mayo Clinic, Parkinson Institute, Massachusetts General Hospital, University of Maryland) and basic science researchers (Duke, Johns Hopkins, Mayo Clinic, Washington University, University of Louisville), in determining the role of genetic, occupational and environmental components in the development of PSP. Specifically, this large case/control study that will involve 500 PSP patients and 1000 controls will seek to determine if there is an association between PSP and specific H1 tau genotypes, alpha-synuclein polymorphisms, parkin gene deficits or other gene-gene interactions. The study will also explore whether there is an association between PSP and occupational and or environmental chemical exposures functionally or structurally similar to known parkinsonian toxicants. This is the first major research award to focus on PSP.

The Movement Disorder Program has begun recruiting patients with PSP for inclusion in the study. Interested parties should contact the Movement Disorder Program at 502-852-4612. It is hoped that this major effort will in turn help find ways to prevent or treat this devastating disease.