Creutzfeldt-Jakob Disease Investigational Lookback Study - UPDATED 07/16/03

The Creutzfeldt-Jakob Disease (CJD) Investigational Lookback Study continues to provide data critical to estimating the risk (if any) of transmission of CJD by blood transfusion. The National Blood Data Resource Center study was designed to collect outcome data for recipients of blood components from donors who later developed this rare, but fatal, neurological disease.

Only the classical form of CJD is under investigation in this study, as no cases of new variant (nv CJD) have been reported in the United States.  The study, now in its ninth year, is funded by a Cooperative Agreement from the Centers for Disease Control and Prevention.

Thus far, 344 transfusion recipients, representing 25 blood donors who later developed CJD, have been investigated. The donors made more than 500 total donations at 15 different blood centers between 1959 and 2002. Of the 344 recipients, 12 have been lost to follow-up. Of the remaining 332, 237 (71%) are deceased, and 95 (29%) were alive at last report. None of the deceased subjects died with CJD.

The surviving recipients continue to be followed annually for vital status. The entire group has a total post-transfusion survival of 1,398 person-years and includes some recipients who were transfused as many as 31 years ago.  Long-term follow-up of surviving recipients will continue indefinitely.

The study will continue indefinitely to accommodate the potentially long, latent period of CJD, or until such time as a significant correlation between CJD and transfusion is established, or a sensitive and specific diagnostic test is developed. In the absence of any epidemiologic evidence to the contrary, the risk of transmission of classical CJD by blood and blood components remains merely theoretical.

Any blood center that receives information that a former donor subsequently developed CJD is asked to contact the NBDRC immediately to obtain information regarding participation in the study.

Please call 301-215-6506 for details on becoming a Basic or Charter Member,
or email us at [email protected]


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