World Trade Center Health Registry--a model for a nanomaterials exposure registry.

Abstract

To describe the development of and some of the early results from the World Trade Center Health Registry (WTCHR). Is the WTCHR a model for a nanomaterials exposure registry? What lessons may be learned from the WTCHR? We describe the steps involved in creation of the WTCHR, from design through implementation. The lessons learned from the WTCHR include thorough documentation of exposure early in the registry, using multimode surveys to maximize response rate, establishing an institutional home with sufficient resources for core as well as in-depth longitudinal and intervention studies, meeting with stakeholders regularly, making data accessible, and timely publication of findings, including wide dissemination of clinical guidelines. The process of creating and maintaining the WTCHR provides important lessons for the possible creation of a nanomaterials exposure registry.