Creutzfeldt-Jakob Disease Surveillance in Recipients of Human Growth Hormone

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The NIDDK Creutzfeldt-Jakob Disease Surveillance in Recipients of Human Growth Hormone project is overseen by the Interagency Committee on Human Growth Hormone (hGH) and Creutzveldt-Jakob Disease (CJD) and includes representives from NIDDK, NICHD, NINDS, CDC and FDA. Between 1963 and 1985, the National Hormone Pituitary Program (NHPP) sent human growth hormone (hGH) to hundreds of physicians across the United States, resulting in the treatment of approximately 7,700 children with growth failure. In 1985, it came to the attention of the Public Health Service that there had been three deaths due to CJD, a rare and incurable brain disease, in individuals who had received hGH as part of the NHPP. The NHPP immediately stopped distributing hGH and began a study to understand the relationship between hGH and CJD. Currently, the Interagency Committee on hGH and CJD follows the cohort of individuals who are known to have received hGH as part of the NHPP. To date, there have been 26 confirmed cases of CJD among hGH recipients in the U.S. Westat, an organization that provides research services, is the contractor that assists the Interagency Committee on hGH and CJD in the follow-up of hGH recipients.