A new unit of the National Institute of Environmental Health Sciences, called the Environmental Autoimmunity Group (EAG), has been established in Bethesda, Maryland at the National Institutes of Health (NIH), in the U.S. Department of Health and Human Services, to conduct pioneering research in understanding the genetic and environmental risk factors that may result in
autoimmune diseases.
The EAG is currently enrolling families -- in which an adult or child
meets criteria for Rheumatoid Arthritis/Juvenile Rheumatoid Arthritis,
Systemic
Lupus Erythematosus, Systemic Sclerosis or Myositis -- and in which a
twin
or sibling of the same gender, who is within 47 months of age, does not
have
any one of these 4 illnesses or another autoimmune disease. Subjects
may
enroll at the NIH Clinical Center in Bethesda, Maryland or in their
local
doctors' offices. Patients remain under the care of their personal
physicians while participating in the study. There is no charge for
study-related evaluations and medical tests at the NIH.
For information about the NIH Twin-Sibs Study please call:
1-800-411-1222 (For TTY: 1-866-411-1010)
Overview of the Study
- The goal of the study is to understand the genetic and environmental
factors that may result in systemic rheumatic diseases.
- The study will perform evaluations to assess why one twin or sibling developed
disease and why the other brother or sister did not.
- Subjects may enroll at the NIH Clinical Center in Bethesda, Maryland or their local
doctors' offices.
- A letter from a referring physician is required.
- Twins or siblings as well as their biological parents will be
enrolled.
- 400 pairs of twins or siblings, in which one has disease and one
does not, will be enrolled.
- Medical records, questionnaires and blood and urine samples will be
collected at enrollment and at the end of the study after 5 years.
- For each subject, annual questionnaire follow-ups will be collected
by mail.
- Subjects who develop new autoimmune diseases during the study will
be reevaluated.
Subject Eligibility
Families are eligible when an adult or child member meets criteria for:
- Rheumatoid arthritis (RA) or
- Juvenile Rheumatoid Arthritis (JRA) or
- Systemic lupus erythematosus (SLE) or
- Systemic sclerosis (SSc, scleroderma) or
- Idiopathic inflammatory myopathy (IIM, meaning any form of adult or
juvenile dermatomyositis, polymyositis or inclusion body myositis
And when a twin or brother or sister of the same gender, and within 47
months of age, does not have rheumatic or autoimmune disease.
- The diagnosis of RA, SLE, SSc or IIM has to be within 47 months of
enrollment.
- Affected and unaffected brothers or sisters must be of
the same gender (both male or both female) and be offspring of the
same parents.
- Normal healthy volunteers, who do not have a blood
relative with a rheumatic or autoimmune disease, and who are matched
to enrolled patients,are also eligible to enroll in the study.
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