The Oklahoma Thrombotic Thrombocytopenic Purpura-Hemolytic Uremic Syndrome Registry: a community service

The Oklahoma Thrombotic ThrombocytopenicPurpura-Hemolytic Uremic Syndrome (TTP-HUS) Registry has enrolled all 335 consecutive patients from central, western and southeastern Oklahoma who had their first episode of clinically diagnosed TTP or HUS from 1989 through 2005; follow-up is complete for 333 patients. Identifying all patients is possible since plasma exchange is the essential treatment for all adults and some children with these disorders and since the Oklahoma Blood Institute (OBI) is the sole provider of plasma exchange services for this region. Patients in the Oklahoma TTP-HUS Registry have come from 46 counties and have been treated in 16 hospitals; 227 physicians have provided the principal care for these patients. A support group formed in 1996 has met 3 times each year, averaging 17 former patients plus 16 additional family members and friends. Registry data are an important source of information for physicians and their patients, providing a complete community perspective of these uncommon disorders.