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                     The Oklahoma TTP-HUS Registry

                                                         Revised February 18, 2011

The Oklahoma TTP-HUS Registry is a program to better understand the cause, clinical course, and long-term outcomes of patients who have clinically suspected TTP-HUS.

Patients. All patients for whom plasma exchange treatment is requested from the Oklahoma Blood Institute (OBI) for suspected thrombotic thrombocytopenia purpura (TTP) or hemolytic-uremic syndrome (HUS) are asked to consent to be included in the Oklahoma TTP-HUS Registry.  The Registry began on January 1, 1989; after 21 years of Registry experience, up to December 31, 2006, we have included 437 patients.  The Oklahoma TTP-HUS Registry is approved annually by the Institutional Review Board of the University of Oklahoma Health Sciences Center and also at all participating hospitals.  All patients or their families have consented to be included in the Registry.  Therefore no patient in our region has been treated with plasma exchange for suspected TTP or HUS and not been included.  The only patients with a diagnosis of TTP or HUS who are not included in The Registry are children with “typical HUS”, a disorder that usually occurs in children less than 6 years old and is preceded by diarrhea caused by E. coli 0157:H7.  These children are not usually treated with plasma exchange because most recover with only supportive care.

          Some patients did not receive plasma exchange treatment: one patient began to recover before plasma exchange was begun; other patients have died before plasma exchange could be initiated. In some patients, plasma exchange is ordered for an autoimmune disease, such as systemic lupus erythematosus, or a complication of pregnancy, such as preeclampsia/HELLP syndrome, when the doctor was suspicious that TTP or HUS was also present.  In some patients plasma exchange was begun for a diagnosis of TTP or HUS and then another unexpected diagnosis was discovered (such as a serious infection or cancer), that explained the presenting clinical features; in these patients the plasma exchange treatment was stopped.  

          Therefore the patients in The Oklahoma TTP-HUS Registry do not all have TTP or HUS.  But at the beginning of their illness, their doctor was concerned that they had TTP or HUS and that they required plasma exchange treatment.  Therefore our Registry is an inception cohort of consecutive patients followed from a constant initial point in their illness, the time when plasma exchange treatment was ordered. Even though the Registry includes some patients in whom an alternative diagnosis became apparent and treatment was stopped, it is important to doctors treating patients with TTP or HUS because is described the total community experience with patients who had – or were initially thought to have – TTP or HUS. 

Click the following links for more details about:

Informed Consent

Data Collection

Follow-up

Patient Group Meetings

Oklahoma TTP-HUS Registry as a resource for patient care

Current Projects

 

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