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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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