Amyotrophic Lateral Sclerosis (ALS) Tissue Donation Program

Despite significant progress in the identification of mechanisms involved in motor neuron
degeneration in Amyotrophic Lateral Sclerosis (ALS) and other motor system diseases, the
actual pathogenesis and cause of these diseases remains unknown. Effective treatment of
these diseases are dependent on the elucidation of their causes. The availability of
diseased and control human tissues will be a critical resource for this research progress. .
Samples of serum, spinal fluid, and urine from patients with motor system diseases can be
used to study biochemical and genetic differences compared to tissues of neurologic disease
controls and normal controls. Furthermore, the availability of autopsied CNS, PNS, as well
as other tissues from patients with ALS or suspected ALS are useful for current and future
research studies into the disease. Therefore, we propose to institute a Tissue Bank
containing blood, urine, and cerebrospinal fluid donated from not only ALS and other motor
neuron disease patients, but also those with other neurologic diseases and normals whose
tissue can be used as controls. In addition there will be an autopsy band for post-mortem
specimens of ALS and other motor neuron disease patients. Each specimen, whether from a
living patient or autopsy will be de-identified and accompanied by a standard set of
clinical information collected from the medical records in order that each specimen is
characterized with the relevant clinical information to maximize the usefulness of the
specimens.

Once established, this tissue bank will provide a resource in which a large number of
samples will be readily available and expedite research by circumventing the delays in
collecting specimens prospectively. These specimens will be used for research in the ALS
Center of Hope at Drexel University College of Medicine and shared with any outside
investigator with a valid IRB approved protocol.