Patients Needed for NIH Funded Study

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Patients Needed for NIH Funded Study

Postby administrator » Mon Jun 01, 2009 10:03 am

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 9 sites across the country (Cleveland OH, Houston TX, Louisville KY, Denver CO, Atlanta GA, Birmingham AL, Los Angeles, CA, Seattle WA, Baltimore MD ) and basic science researchers (Duke, Harvard University, 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 866-PSP-0448. It is hoped that this major effort will in turn help find ways to prevent or treat this devastating disease.

A few points of clarification and further information:

Contact for the main study and for the University of Louisville site is
Casey Shepherd, Clinical Coordinator. She can be reached at 502-561-3101 or The study website is

Every person with PSP who wants to be involved in the study needs to bring with them two “controls.” The controls should: 1) not have PSP; 2) not be a blood relative; and 3) should be similar in age to the person with PSP (plus or minus 5 years). Additionally, one control must be the same gender as the person with PSP (usually an in-law); the other can be a different gender as the person with PSP (usually the spouse).

They are also in the process of adding 4-5 additional sites across the US.
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