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AMERICAN RED CROSS AND CDC BLOOD DONOR "LOOK BACK" STUDY
The American National Red Cross (Red Cross) Jerome H. Holland Laboratory for Biomedical Research in Rockville, Maryland is collecting small volumes of blood from patients afflicted with various forms of transmissible spongiform encephalopathies (TSE)/prion diseases and their blood-related family members: blood relatives of the patient with genetic form are eligible; blood relatives of the patient with sporadic CJD are eligible only if blood from a patient was provided for Red Cross study. The purpose of the research is to build a blood sample repository for studies on ways to detect the presence of prion protein or other markers of the disease in human blood.
Recent epidemiological evidence indicates that blood of patients with variant form of Creutzfeldt-Jakob disease (vCJD), that is prevalent in the United Kingdom, is infectious.
The questions about the possibility that blood from patients with the sporadic and familial forms of TSE might also be infectious is still not resolved even though 10 years of searching has not revealed any examples of blood-related transmission from patients with these non-variant forms of disease.
The development of a blood test to identify affected people in the pre-clinical stage of disease could eliminate the uncertainty about TSE-related blood safety. Some tests have been successful for testing animals infected with TSEs, but in order to know if any test will be reliable in humans, we need to test human blood.
CJD patients and their families are the only source of blood specimens that can answer this question, and we therefore ask you to support our effort.
If you or an affected relative is interested in participating, please contact the name listed below. No more than 50 ml of blood should be collected at a location convenient to you through your own arrangements with your physician and the blood sample should be sent to the Holland Laboratory at no cost to you. The samples will be processed and stored, frozen indefinitely, at the Holland Laboratory in Rockville, Maryland. The Red Cross will provide access to only designated research staff at the Red Cross or other research groups that have provided convincing evidence for a test to detect TSE in animals.
Participating individuals will NOT be notified about test results because the tests that will be performed on blood are experimental and their significance is not known and will remain uncertain for some years to come. The CJD foundation will be notified of any publications coming from our research.
Dr. Larisa Cervenakova; Phone: 240-314-3536; e-mail: email@example.com