AHMF: National CFS patient registry

Finally, in late 2000 CDC will begin to develop a national CFS patient registry. The primary goal of the registry is to supplement the findings of population-based epidemiologic studies of CFS with longitudinal information on a large number of CFS patients. Once entered in the registry, patients will be followed yearly until death. Cause of death will be documented from medical records, supplemented with autopsy findings as appropriate. Cause of death in CFS patients may have implications for the pathogenesis and burden of this disease. For example, if the hypothesis that CFS patients have low cortisol levels were true, then an unusually high number of deaths attributable to failure to survive stressful events, such as trauma or major surgery, would be expected.

Registry data will also address concerns expressed by patient advocates over high suicide rates for CFS patients. In addition, establishment of a registry will be the first step toward providing the infrastructure required to establish a CFS patient brain bank, as recommended by 1996 and 1999 peer reviews. Many current hypotheses about CFS pathogenesis require neuropathologic analysis of central nervous system tissues and these are not available by any other mechanism. In the fall of 2000, CDC will convene a workshop to optimally focus the objectives, strategy, and methods for the Registry and to identify long-term collaborators.