WHAT RESEARCH IS BEING DONE ON TTP-HUS IN OKLAHOMA?
Our most important research is to carefully follow all of our patients forever. Part of our program is to have meetings of former patients and their families at the OBI three times each year. We began these meetings in 1996, and they have been well attended each time. These meetings have been important for us to provide information to our former patients and their families. We also learn a lot from our patients. We contact every patient whom we have treated for the diagnosis of TTP-HUS every six months. Because there is often no clear distinction between patients who have TTP-HUS and patients who may have had another cause for their illness, we continue to stay in touch with everyone whom we have treated with plasma exchange. This includes some patients whom we feel may not have had TTP-HUS. We also stay in contact with the patient’s doctor, to keep current records of his or her medical care and laboratory data. To measure completeness of recovery, we do a questionnaire with each patient every year called a “Quality-of-Life” survey. The value of the “Quality-of-Life” survey is that it goes beyond routine medical evaluation and actually describes how patients are doing in their daily activities. We save blood samples from the time of our first plasma exchange treatment to develop tests that may help with diagnosis and understanding of TTP-HUS. We ask all of our patients to sign a consent form that allows us to keep their records, to stay in contact, and to do the blood test research.
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