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Pennsylvania Consortium: Clinical Database - NCT00718445-19104(Clinical Trial 231838)



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City:  Philadelphia
State:  
PA
Zip Code: 19104
Conditions: Amyotrophic Lateral Sclerosis - Cerebrospinal Fluid - Neurodegenerative Disease - Motor Neuron Disease
Purpose: In order to streamline disease research in ALS and other motor neuron diseases, we have joined a consortium of clinical centers (Hershey and University of Pittsburgh) who will collaborate on clinical and basic research projects. As part of this collaboration, de-identified clinical data from subjects at each institution will be entered into a joint database kindly provided and maintained by the ALS Hope Foundation. This database is password protected and contains only de-identified information. In addition to clinical data, any research specimens that are available through IRB approved tissue collections will be linked to the subject so that the collaborating investigators can share samples and have the maximum information. This will enhance the usefulness of each specimen. Since data entered into the database will be existing data from the charts without any identifying information as outlined in the DUCOM IRB Guidelines section 7.2-4, this protocol should be exempt. Once established, the database will provide a resource in which clinical data on a large number of patients along with tissue (blood, urine, muscle, csf, and autopsy) samples will be readily available. This will expedite research by circumventing the delays in collecting specimens prospectively and increase the number of specimens available by allowing the collaborating researchers access to each others specimens. In each case there will be a formal request placed to use specimens that are at the other institutions. These specimens will be used for research in the ALS Center of Hope at the Drexel University College of Medicine and shared with outside investigators with valid IRB approved protocols.
Study summary:
Criteria: Inclusion Criteria: - Clinical data on patients with motor neuron diseases (ALS, PLS, Bulbar Palsy) and related disorders Exclusion Criteria: - Any patient without a motor neuron disease or related disorder
Study is available at: MDA/ALS Center of Hope
Philadelphia, PA 19104
United States
If you are interested in this clinical trial please use the contact information above. If you would like to get additional information about this clinical trial please visit ClinicalTrials.gov.
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Data Source: ClinicalTrials.gov
Date Processed: March 22, 2011
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