Challenge

Cadaveric-derived human growth hormone (HGH) was effective in treating growth failure. Between 1963 and 1985, through the federal government’s National Hormone and Pituitary Program (NHPP), HGH was distributed to 250+ physicians.

In 1985, 3 people who received HGH therapy through the NHPP died of Creutzfeldt-Jakob disease (CJD), a rare neurogenerative disease. These cases prompted the federal government to terminate HGH distribution.

Since then, for the National Institute of Diabetes, Digestive, and Kidney Diseases, Westat has been conducting a surveillance study to identify the scope of the CJD problem in recipients of NHPP-provided hormone. Special attention was paid to whether cases started HGH before or after 1977, when a new laboratory purification step was added.

Solution

The HGH recipients and their families were located and surveyed. Death certificates, medical records, and pathology specimens were reviewed for evidence of CJD.

Results

Through the efforts of this study and reports from other sources, 32 confirmed cases of CJD have been identified among NHPP recipients. No cases began treatment after 1977.

Westat continues to analyze and report findings related to CJD and other illnesses.