Chronic Beryllium Disease Bio-Repository Initiative

Background/Purpose:

Chronic Beryllium Disease (CBD) may result from occupational exposure to beryllium and has been one of the major health problems affecting the former and current DOE workforce. Of the 60,000 potentially exposed former and current workers who have participated in DOE-conducted medical surveillance programs, approximately 800 have been identified to have beryllium sensitization (BeS, a condition that may lead to CBD in some people) and over 200 have been diagnosed with CBD. In the absence of an animal model to study the disease, current research to improve understanding, diagnosis and treatment of this disease depends entirely on human cells and tissues. Given that DOE has conducted its medical surveillance programs for more than a decade, it is in a unique position to facilitate research on CBD by setting up a repository of specimens. This initiative is being funded through the Office of Health and Safety's Former Worker Medical Screening Program.

This repository will include donated blood and tissues (bio-specimens) from former and current DOE workers with CBD, workers who developed sensitization to beryllium (BeS), and workers exposed to beryllium who are not sensitized and do not have the disease (controls). Based on the current number of workers who were either diagnosed with CBD or BeS and matching controls, the total number of donors for the Repository is estimated as 1,200 to 1,500 individuals.

Future Plans:

The CBD Repository development effort is comprised of two phases:

Phase I, focused on preparing a Standard Protocol (to be implemented in Phase II) by a Committee of expert clinicians and scientists from National Jewish Medical and Research Center, University of Pennsylvania Hospital, University of California Los Angeles, University of California San Francisco, University of Colorado, National Institute for Occupational Safety and Health, and Mayo Clinic.

Phase II (to be completed in 36 months) is being conducted with the participation of five clinical centers which have conducted clinical evaluations for the majority of current and former DOE workers suspected of having CBD: National Jewish Medical and Research Center, University of Pennsylvania Hospital, East Tennessee Pulmonary Associates, University of California Los Angeles, and University of California San Francisco. Donations of blood and tissue samples will be obtained from individuals diagnosed either with CBD or BeS, as well as matching control individuals (those exposed to beryllium but without sensitivity or disease).

DOE has been in close contact with National Heart Lung and Blood Institute (NHLBI), which has established a repository on chronic lung diseases, with the necessary infrastructure to maintain and distribute the specimens to expert scientists. It is anticipated that the clinical centers will transfer the donated specimens to this newly-established NHLBI Lung Tissue Research Consortium Repository.

On July 16, 2008, NHLBI has officially agreed on the transfer of the specimens.

For further information on the Beryllium Bio-Repository, please contact Dr. Bonnie Richter.