AMERICAN RED CROSS AND CDC BLOOD DONOR "LOOK BACK" STUDY
Due to the recent discovery of two cases of vCJD blood transfusion transmission in the U.K. the American Red Cross, at the October 14 FDA TSEAC meeting, announced an acceleration of their "Look Back" study implemented in 1995. In this study all blood and blood products donated to the American Red Cross by a person who subsequently died of CJD will be traced.
This "Look Back" study is a very important one for all of our families of CJD patients, past and present. If your loved one was a blood donor or a blood recipient and you wish to participate please contact one of the names listed below.
As the wife of a regular blood donor who died of CJD in 2000 I am relieved to know that this study is being given high priority by the ARC and the CDC. I know we all certainly hope that sCJD is not a vector, however, we won't know unless this research is conducted.
The recipients of any whole blood or blood product donated by a person who subsequently died of CJD will NOT be notified unless medically appropriate notification and counseling is deemed necessary by the health care provider.
Contact Information:
Kerri Dorsey, MPH
301-738-0592
E-mail: dorseyke@usa.redcross.org
Shimian Zou, PhD
301-738-0644
E-mail: zous@usa.redcross.org
This is our opportunity to help science in an important way and to honor a loved one struck with this devastating disease either past or present.
Please call me if you have any questions at 1-800-659-1991.
My Sincere Regards,
Florence Kranitz
President
CJD Foundation
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 family members for the purpose of building a blood sample repository suitable for evaluating the presence of pre-clinical diagnostic markers.
The recent discovery of three individuals infected with CJD after receiving blood transfusions from patients with the variant form of disease (vCJD) that is prevalent in the United Kingdom has raised new concerns about the safety of the blood supply. A number of vCJD patients in the United Kingdom and in France had been regular blood donors for the past decade.
These new developments have led to questions about of the possibility that blood from patients with the sporadic and familial forms of CJD might also be infectious, even though 10 years of searching has not revealed any examples of blood-related transmission from patients with the senon-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 decides to participate, please contact one of the names listed below. Approximately 30 ml of blood will be drawn at location convenient to you and the blood sample will be sent to the Holland Laboratory at no cost to you. The samples will be processed and stored at the Holland Laboratory in Rockville, Maryland, and the American 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.
Contact information:
Dr. Larisa Cervenakova, 301-738-0765
E-mail: cervenakl@usa.redcross.org
Dr. Paul Brown, 301-652-5940
E-mail: paulwbrown@comcast.com
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