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.
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.
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.