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Primary Lateral Sclerosis (PLS) is an upper motor neuron
disease that is disabling but not life threatening, rare (possibly no more than
1000 in North America), usually sporadic, and challenging to distinguish in the
initial stages from ALS, hereditary spastic paraparesis (HSP), multiple
sclerosis, and spinal cord compression. Efforts are being made to find pathways
that are involved in producing PLS so a target may be found from which a
treatment could be developed.
The goal of the PLS Registry is to maintain a bank of cell lines, to be
available to a consortium of researchers, on all patients who have had a
diagnosis of PLS confirmed for at least 4 years. CSF for proteomic studies, and
brain and spinal cord tissue at autopsy will also be collected from as many as
possible. Cell lines from unaffected family members and environmental controls
are also maintained in the registry as well as information on family health and
environmental exposure.
To ascertain all known cases, ALS Centers and neurologists are encouraged to
give their PLS patients the contact information below for the Registry.
Nailah Siddique RN MSN
Clinical Nurse Specialist
Neuromuscular Disorders Program
Northwestern University, Feinberg School of Medicine Mailing address: Tarry 13-715, 303 East Chicago Ave, Chicago IL 60611 Fed Ex address: Tarry 13-715, 300 East Superior St, Chicago IL 60611
Phone:312-503-2712
Fax: 312-908-0865
Office Hours: 9:30 -2:30 central
time.
Phone: 312-503-0160
Fax: 312-908-0865
E-mail:
nsiddique@northwestern.edu
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