We are in our final year of recruitment for the study. We have enrolled almost 300 patients, thus far. We will continue to enroll through the Summer of 2012. If you or someone you know are interested in participating, please contact us today!
UPDATE 4/26/10:
We are in our fourth year of the study and have enrolled over 200 patients, thus far. We still have a long way to go to reach our goal of 500! We are in the process of adding a new screening site in Salt Lake City, Utah. We hope to be enrolling patients in Utah this summer.
UPDATE 6/16/09:
We are currently 3 years into our study of “Genetic and Environmental Risk Factors for PSP” and have enrolled over 150 PSP patients throughout the U.S. In order to reach our goal of 500 patients we have expanded our recruitment sites to include 4 new sites, including one international site. We are pleased to announce the addition of the University of South Florida [Tampa FL], Kansas University Medical Center [Kansas City KS], Rush University Medical Center [Chicago IL] and the University of Toronto [Toronto CA] to our study! We hope that these 4 new sites will be enrolling patients by late summer.
UPDATE 12/10/07 PSP Natural History Longitudinal Study
As an extension of the current NIH-funded Progressive Supranuclear Palsy research grant, “Genetic and Environmental Risk Factors for PSP,” we are pleased to announce that CurePSP has funded a pilot longitudinal study so we can better understand the natural history of PSP. The main purpose of this study is to determine predictors of survival in PSP by conducting this first longitudinal study to examine the genetic and environmental risk factors for disease. Determination of the natural history and prognosis is very important for patient care, health care planning, and clinical therapeutic trials design. This pilot study will follow 60 PSP patients and 60 matched controls out of the 1500 subjects enrolled in our case-control study through the course of their disease. This pilot study will allow us to collect the needed information to prepare an NIH grant without losing key information in the interim. Our longitudinal study focuses on rate of disease progression and identifying factors that are associated with more rapid rate of decline, nursing home placement and survival in PSP. In addition, data regarding the rate of decline on movement, balance, speech, memory, and vision tests over the course of PSP will be obtained. We will also collect blood samples to identify biologic markers of disease progression and establish a biological specimen repository at the University of Louisville.
The study population will consist of patients currently enrolled in the NIH-funded study and their primary caregivers (Control 2 from the original study). The patients will be invited to return to the screening site where they initially were seen for an annual follow up visit. The follow up visit will include a clinical evaluation similar to the one administered during the initial visit and a blood sample donation. Caregivers will be asked to participate in a brief screening test and to complete some brief questionnaires along with providing a single blood sample. These blood samples are invaluable resources for analysis of the progression of the disease as well as for determination of potential biological markers of disease progression. Finally, when the time comes, we will be asking the patients to consider the decision to donate their brain to the Eloise H. Troxel Memorial PSP Brain Bank. This donation will allow critical research and confirmation of PSP diagnosis. CurePSP has kindly awarded us funds to help offset the cost of the harvesting of the brain.
As with all progressive diseases, quality of life is of the utmost concern. Longitudinal studies that follow the natural history of disease progress are incredibly important tools in furthering the understanding, improving the treatment and discovering the cure. Combined with the information collected from the “Genetic and Environmental Risk Factors for PSP” study this extension will help us to determine whether progression of the disease is impacted by environmental exposure. We are pleased to be partnered with CurePSP in this important research endeavor.
UPDATE 9/14/07:
We are still actively seeking new participants for our study. We currently have 8 Screening Sites enrolling patients and 2 more in the works. If you or a friend or family member have PSP and are interested in participating in our study, please contact us either via email: info@pspstudy.com or call us toll-free at 1-866-PSP-0448.
UPDATE 3/21/07:
We are still enrolling and screening subjects. If you are interested in participating please contact us. To facilitate the process, please have any medical records related to your diagnosis available.
UPDATE 1/5/07:
We are continuing to enroll subjects. If you are a participant and have any questions about the progress of the study, please feel free to contact us at 1-866-PSP-0448.
UPDATE 11/15/06:
Our sites have begun enrolling and screening subjects!
On, August 14, 2006 the University of Louisville held
a press conference to announce the NIH grant supporting the PSP
research study: Genetic and Environmental Risk Factors for PSP. The
conference was covered by 5 local and regional television stations
along with the local print media.
Pictured from Left to Right: Irene Litvan, M.D., Director of the University of Louisville Movement Disorder Program, Mark Pfieffer, M.D. Dean of the University of Louisville School of Medicine, Samuel Weakley, M.D., former Professor of Surgery and University benefactor, James Ramsey, Ph.D., President of the University of Louisville.
