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Pennsylvania Consortium: Clinical Database

This study has been terminated.
(Terminated due to lack of funding and support staff)
MDA/ALS Center of Hope
Information provided by (Responsible Party):
Drexel University ( Drexel University College of Medicine ) Identifier:
First received: July 16, 2008
Last updated: June 23, 2016
Last verified: June 2016

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.

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.

Amyotrophic Lateral Sclerosis
Neurodegenerative Disease
Motor Neuron Disease

Study Type: Observational
Study Design: Observational Model: Cohort
Official Title: Pennsylvania Consortium: Clinical Database

Resource links provided by NLM:

Further study details as provided by Drexel University:

Primary Outcome Measures:
  • None Specified [ Time Frame: None Specified ]
    This database is intended to increase the efficiency of other IRB approved protocols by increasing accessibility of information and biological samples from the ALS cohort. No direct outcome measures have been specified for the creation of the database.

Enrollment: 25
Study Start Date: March 2008
Study Completion Date: December 2015
Primary Completion Date: December 2015 (Final data collection date for primary outcome measure)
  • Patients seen in the MDA/ALS Center of Hope at Drexel University College of Medicine
  • Patients seen in the Department of Neurology at Drexel University College of Medicine


Ages Eligible for Study:   18 Years to 89 Years   (Adult, Senior)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No
Sampling Method:   Non-Probability Sample
Study Population
Patients seen in the MDA/ALS Center of Hope at Drexel University College of Medicine Patients seen in the Department of Neurology at Drexel University College of Medicine

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
  Contacts and Locations
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Please refer to this study by its identifier: NCT00718445

United States, Pennsylvania
MDA/ALS Center of Hope
Philadelphia, Pennsylvania, United States, 19107
Sponsors and Collaborators
Drexel University College of Medicine
MDA/ALS Center of Hope
  More Information

Responsible Party: Drexel University College of Medicine Identifier: NCT00718445     History of Changes
Other Study ID Numbers: Internal-17445
Study First Received: July 16, 2008
Last Updated: June 23, 2016

Keywords provided by Drexel University:
Amyotrophic Lateral Sclerosis
Cerebrospinal Fluid
Neurodegenerative Disease
Motor Neuron Disease
Autonomic Nervous System
Neurodegenerative Diseases
Movement Disorders

Additional relevant MeSH terms:
Motor Neuron Disease
Neurodegenerative Diseases
Nervous System Diseases
Neuromuscular Diseases
Spinal Cord Diseases
Central Nervous System Diseases
Metabolic Diseases
Amyotrophic Lateral Sclerosis
Pathologic Processes
TDP-43 Proteinopathies
Proteostasis Deficiencies processed this record on May 23, 2017