Participate
in Research
(The
following information is from the Les Turner ALS Foundation
web site)
The
research team at the Les Turner ALS Research Laboratory at
Northwestern University Feinberg School of Medicine continues
to recruit families for studies involving both familial (inherited)
and sporadic (non-inherited) ALS. Although there will not
be an immediate benefit to people living with ALS, an understanding
of the causes of ALS may eventually benefit patients with
the disease. The research team is optimistic that information
from these studies will lead to improved methods for diagnosing
ALS and provide targets from which rational treatments and
even preventive measures may be developed.
Family
Studies and Linkage Analysis for Familial ALS (FALS)
In this study, the research team is recruiting large non-SOD1
familial ALS (FALS) families to search for genes other than
SOD1, which might cause the disease. Linkage analysis requires
blood samples from at least two family members diagnosed with
ALS and as many unaffected family members as possible. Through
linkage analysis, the research team hopes to identify differences
in gene structure between affected and unaffected family members
and to find the gene causing the disease in the family. In
addition, current investigations include examination of the
clinical manifestations of disease in both SOD1 and non-SOD1
FALS.
Family
Studies for Sporadic ALS (SALS)
In this study, the research team is trying to determine whether
genetic factors may predispose an individual to developing
ALS. In the past, research has looked at cause and effect
in sporadic ALS one variable at a time. The team suspects
that sporadic ALS may be the result of not one, but several,
genetic factors coming together to produce a threshold of
vulnerability, with which environmental influences may interact
to produce disease. Recent advances in the field of statistical
genetics make it possible to answer such questions if there
are sufficient study participants available. Blood samples
from ALS patients and their living parents and brothers and
sisters are needed for this study. Additionally, the study
needs samples from a patient and that patient's brother or
sister, who is preferably at least as old as the patient when
he or she first noted symptoms of ALS.
ALS
Twin Study
The research team is investigating twin pairs (either identical
or fraternal twins) where either one or both twins have ALS.
Blood samples are required from both the person with ALS and
the twin. Additionally, a questionnaire relating to environmental
exposures will be administered.
Environmental
Studies for Sporadic ALS
The research team is interested in learning more about environmental
factors, which may play a role in producing ALS. People living
with ALS or their caregivers complete a detailed survey about
the patient's life. Questions cover such areas as place of
birth and residence, types of employment, exposure to chemicals,
history of major health problems, injuries and treatments
and athletic endeavors. Participation in this study requires
involvement in the sporadic ALS study, which entails giving
a blood sample.
Each
of these studies requires two tablespoons of blood from each
participant. The research team will supply the needed tubes
and instructions for returning the samples via Federal Express
without charge to the participants. Most physicians and labs
will draw the samples without charge, but the study will pay
for drawing of samples if applicable.
If
you and your family are interested in participating in one
of these studies, contact Lisa Dellefave, M.S., at l-dellefave@northwestern.edu
or (312) 503-0154 or Nailah Siddique, R.N., M.S.N., at nsiddique@northwestern.edu
or (312) 503-2712.
For
more information, visit the Feinberg
School of Medicine's Neuromuscular Disorders Program web site.
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