{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,27]],"date-time":"2026-02-27T13:30:38Z","timestamp":1772199038494,"version":"3.50.1"},"reference-count":35,"publisher":"Georg Thieme Verlag KG","issue":"02","funder":[{"name":"Hematology Research Fund of the University of Oklahoma Health Sciences Center","award":["NIH 3U01HL72283\u201310S1"],"award-info":[{"award-number":["NIH 3U01HL72283\u201310S1"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Hamostaseologie"],"published-print":{"date-parts":[[2013]]},"abstract":"<jats:title>Summary<\/jats:title><jats:p>The Oklahoma Thrombotic Thrombocytopenic Purpura-Haemolytic Uraemic Syndrome (TTPHUS) Registry has a 24 year record of success for collaborative clinical research, education, and patient care. This article tells the story of how the Registry began and it describes the Registry\u2019s structure and function. The Registry provides a model for using a cohort of consecutive patients to investigate a rare disorder. Collaboration between Oklahoma, United States and Bern, Switzerland has been the basis for successful interpretation of Registry data.<\/jats:p><jats:p>Registry data have provided new insights into the evaluation and management of TTP. Because recovery from acute episodes of TTP has been assumed to be complete, the increased prevalence of hypertension, diabetes, depression, and death documented by long-term follow-up was unexpected. Registry data have provided opportunities for projects for students and trainees, education of physicians and nurses, and also for patients themselves. During our follow-up, patients have also educated Registry investigators about problems that persist after recovery from an acute episode of TTP. Most important, Registry data have resulted in important improvements for patient care.<\/jats:p>","DOI":"10.5482\/hamo-12-10-0016","type":"journal-article","created":{"date-parts":[[2013,1,31]],"date-time":"2013-01-31T12:15:36Z","timestamp":1359634536000},"page":"105-112","source":"Crossref","is-referenced-by-count":16,"title":["The Oklahoma thrombotic thrombocytopenic purpura-haemolytic uraemic syndrome Registry"],"prefix":"10.5482","volume":"33","author":[{"given":"S. K.","family":"Vesely","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"D. R.","family":"Terrell","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"C. C.","family":"Deford","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J. A.","family":"Reese","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Z. L.","family":"Al-Nouri","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"L. M.","family":"Stewart","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"K. H.","family":"Lu","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"D. S.","family":"Muthurajah","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"J. N.","family":"George","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"194","published-online":{"date-parts":[[2018,2,5]]},"reference":[{"key":"ref1","doi-asserted-by":"crossref","first-page":"393","DOI":"10.1056\/NEJM199108083250604","article-title":"Comparison of plasma exchange with plasma infusion in the treatment of thrombotic thrombocytopenic purpura","volume":"325","author":"GA Rock","year":"1991","journal-title":"New Eng J Med"},{"key":"ref2","doi-asserted-by":"crossref","first-page":"873","DOI":"10.1111\/j.1537-2995.2008.02082.x","article-title":"Clinical outcomes after platelet transfusions in patients with thrombotic thrombocytopenic purpura","volume":"49","author":"KK Swisher","year":"2009","journal-title":"Transfusion"},{"key":"ref3","doi-asserted-by":"crossref","first-page":"60","DOI":"10.1182\/blood-2003-01-0193","article-title":"ADAMTS13 activity in thrombotic thrombocytopenic purpura-hemolytic uremic syndrome: relation to presenting features and clinical outcomes in a prospective cohort of 142 patients","volume":"101","author":"SK Vesely","year":"2003","journal-title":"Blood"},{"key":"ref4","doi-asserted-by":"crossref","first-page":"1578","DOI":"10.1056\/NEJM199811263392202","article-title":"Von Willebrand factor-cleaving protease in thrombotic thrombocytopenic purpura and the hemolyticuremic syndrome","volume":"339","author":"M Furlan","year":"1998","journal-title":"New Engl J Med"},{"key":"ref5","doi-asserted-by":"crossref","first-page":"1585","DOI":"10.1056\/NEJM199811263392203","article-title":"Antibodies to von-Willebrand factor-cleaving protease in acute thrombotic thrombocytopenic purpura","volume":"339","author":"HM Tsai","year":"1998","journal-title":"New Eng J Med"},{"key":"ref6","doi-asserted-by":"crossref","first-page":"1351","DOI":"10.1001\/jama.290.10.1351","article-title":"Effect of awareness of a randomized controlled trial on use of experimental therapy","volume":"290","author":"WF Clark","year":"2003","journal-title":"JAMA"},{"key":"ref7","doi-asserted-by":"crossref","first-page":"1432","DOI":"10.1111\/j.1538-7836.2005.01436.x","article-title":"The incidence of thrombotic thrombocytopenic purpurahemolytic uremic syndrome: all patients, idiopathic patients, and patients with severe ADAMTS13 deficiency","volume":"03","author":"DR Terrell","year":"2005","journal-title":"J Thromb Haemost"},{"key":"ref8","doi-asserted-by":"crossref","first-page":"844","DOI":"10.1002\/ajh.21833","article-title":"Different disparities of gender and race among the thrombotic thrombocytopenic purpura and hemolytic-uremic syndromes","volume":"85","author":"DR Terrell","year":"2010","journal-title":"Am J Hematol"},{"key":"ref9","first-page":"273","article-title":"The Oklahoma Thrombotic Thrombocytopenic Purpura-Hemolytic Uremic Syndrome Registry: a community service","volume":"100","author":"KK Johnson","year":"2007","journal-title":"J Okla State Med Assoc"},{"key":"ref10","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1002\/jca.10045","article-title":"A support group for patients who have recovered from thrombotic thrombocytopenic purpura-hemolytic uremic syndrome: the six year experience of the Oklahoma TTP-HUS Study Group","volume":"18","author":"MA Howard","year":"2003","journal-title":"J Clin Apheresis"},{"key":"ref11","doi-asserted-by":"crossref","first-page":"168","DOI":"10.1002\/jca.20174","article-title":"Support groups for patients who have recovered from thrombotic thrombocytopenic purpura","volume":"23","author":"P Ambadwar","year":"2008","journal-title":"J Clin Apheresis"},{"key":"ref12","doi-asserted-by":"crossref","first-page":"118","DOI":"10.1111\/j.1537-2995.2008.01938.x","article-title":"Longterm deficits in health-related quality of life following recovery from thrombotic thrombocytopenic purpura","volume":"49","author":"QF Lewis","year":"2009","journal-title":"Transfusion"},{"key":"ref13","doi-asserted-by":"crossref","first-page":"1092","DOI":"10.1111\/j.1537-2995.2009.02101.x","article-title":"Cognitive deficits after recovery from thrombotic thrombocytopenic purpura","volume":"49","author":"KA Kennedy","year":"2009","journal-title":"Transfusion"},{"key":"ref15","doi-asserted-by":"crossref","first-page":"1500","DOI":"10.1182\/blood-2009-09-243790","article-title":"Survival and relapse in patients with thrombotic thrombocytopenic purpura","volume":"115","author":"JA Hovinga Kremer","year":"2010","journal-title":"Blood"},{"key":"ref16","doi-asserted-by":"crossref","first-page":"1149","DOI":"10.1111\/j.1537-2995.2004.03422.x","article-title":"Pregnancy outcomes after recovery from thrombotic thrombocytopenic purpura-hemolytic uremic syndrome","volume":"44","author":"SK Vesely","year":"2004","journal-title":"Transfusion"},{"key":"ref17","doi-asserted-by":"crossref","first-page":"512","DOI":"10.1097\/SMJ.0b013e318046583f","article-title":"Overlapping features of thrombotic thrombocytopenic purpura and systemic lupus erythematosus","volume":"100","author":"JN George","year":"2007","journal-title":"Southern Med J"},{"key":"ref19","doi-asserted-by":"crossref","first-page":"49","DOI":"10.1002\/jca.20091","article-title":"Rituximab therapy for thrombotic thrombocytopenic purpura: a proposed study of the Transfusion Medicine\/ Hemostasis Clinical Trials Network with a systematic review of rituximab therapy for immune-mediated disorders","volume":"21","author":"JN George","year":"2006","journal-title":"J Clin Apheresis"},{"key":"ref20","doi-asserted-by":"crossref","first-page":"1659","DOI":"10.1111\/j.1537-2995.2006.00986.x","article-title":"Randomized clinical trials in thrombotic thrombocytopenic purpura: where do we go from here?","volume":"46","author":"JE Kiss","year":"2006","journal-title":"Transfusion"},{"key":"ref21","doi-asserted-by":"crossref","first-page":"277","DOI":"10.1111\/j.1600-0609.2008.01040.x","article-title":"The Oklahoma Thrombotic Thrombocytopenic Purpura-Hemolytic Uremic Syndrome Registry: the Swiss Connection","volume":"80","author":"JN George","year":"2008","journal-title":"Eur J Haematol"},{"key":"ref22","doi-asserted-by":"crossref","first-page":"297","DOI":"10.3324\/haematol.2011.051433","article-title":"Evidence for a role of anti-ADAMTS13 autoantibodies despite normal ADAMTS13 activity in recurrent thrombotic thrombocytopenic purpura","volume":"97","author":"R Froehlich-Zahnd","year":"2012","journal-title":"Haematologica"},{"key":"ref23","doi-asserted-by":"crossref","first-page":"4060","DOI":"10.1182\/blood-2010-07-271445","article-title":"How I treat patients with thrombotic thrombocytopenic purpura \u2013 2010","volume":"116","author":"JN George","year":"2010","journal-title":"Blood"},{"key":"ref24","doi-asserted-by":"crossref","DOI":"10.1182\/asheducation.V2012.1.604.3798564","volume-title":"Diagnostic and therapeutic challenges in the thrombotic thrombocytopenic purpura and hemolytic uremic syndromes","author":"JN George","year":"2012"},{"key":"ref25","doi-asserted-by":"crossref","first-page":"139","DOI":"10.1097\/00005792-196603000-00003","article-title":"Thrombotic thrombocytopenic purpura: report of 16 cases and review of the literature","volume":"45","author":"EL Amorosi","year":"1966","journal-title":"Medicine"},{"key":"ref26","doi-asserted-by":"crossref","first-page":"120","DOI":"10.1002\/(SICI)1098-1101(1998)13:3<120::AID-JCA5>3.0.CO;2-E","article-title":"Thrombotic thrombocytopenia purpura-hemolytic uremic syndrome: Diagnosis and management","volume":"13","author":"JN George","year":"1998","journal-title":"J Clin Apheresis"},{"key":"ref27","first-page":"309","article-title":"The Oklahoma Thrombotic Thrombocytopenic Purpura-Hemolytic Uremic Syndrome Registry: a resource for medical education","volume":"100","author":"KK Johnson","year":"2007","journal-title":"J Okla State Med Assoc"},{"key":"ref28","doi-asserted-by":"crossref","first-page":"896","DOI":"10.1046\/j.1537-2995.2000.40080896.x","article-title":"Complications of plasma exchange in 71 consecutive patients treated for clinically suspected thrombotic thrombocytopenic purpura-hemolytic uremic syndrome","volume":"40","author":"MA Rizvi","year":"2000","journal-title":"Transfusion"},{"key":"ref29","doi-asserted-by":"crossref","first-page":"415","DOI":"10.1046\/j.1537-2995.2003.00336.x","article-title":"Complications of plasma exchange in patients treated for clinically suspected thrombotic thrombocytopenic purpura-hemolytic uremic syndrome: an additional study of 78 consecutive patients","volume":"43","author":"JR McMinn","year":"2003","journal-title":"Transfusion"},{"key":"ref30","first-page":"154","article-title":"Complications of plasma exchange in patients treated for clinically suspected thrombotic thrombocytopenic purpura-hemolytic uremic syndrome. III. An additional study of 57 consecutive patients, 2002-2005","volume":"46","author":"MA Howard","year":"2006","journal-title":"Transfusion"},{"key":"ref31","doi-asserted-by":"crossref","first-page":"392","DOI":"10.1111\/j.1537-2995.2008.02030.x","article-title":"Complications of plasma exchange in patients treated for thrombotic thrombocytopenic purpura. IV. An additional study of 43 consecutive patients, 2005-2008","volume":"49","author":"L Nguyen","year":"2009","journal-title":"Transfusion"},{"key":"ref32","doi-asserted-by":"crossref","first-page":"2525","DOI":"10.1111\/j.1537-2995.2012.03646.x","article-title":"Decreasing frequency of plasma exchange complications in patients treated for thrombotic thrombocytopenic purpura-hemolytic uremic syndrome, 1996-2011","volume":"52","author":"S Som","year":"2012","journal-title":"Transfusion"},{"key":"ref33","doi-asserted-by":"crossref","first-page":"124","DOI":"10.1046\/j.1537-2995.1989.29289146829.x","article-title":"Complications of plasma exchange","volume":"29","author":"DMC Sutton","year":"1989","journal-title":"Transfusion"},{"key":"ref34","doi-asserted-by":"crossref","first-page":"167","DOI":"10.1016\/S1473-0502(03)00111-3","article-title":"The Canadian Apheresis Registry","volume":"29","author":"GA Rock","year":"2003","journal-title":"Transfusion and Apheresis Science"},{"key":"ref35","doi-asserted-by":"crossref","first-page":"270","DOI":"10.1002\/jca.20143","article-title":"Complications of therapeutic plasma exchange: a prospective study of 1727 procedures","volume":"22","author":"D Shemin","year":"2007","journal-title":"J Clin Apheresis"},{"key":"ref36","doi-asserted-by":"crossref","first-page":"111","DOI":"10.1002\/jca.20167","article-title":"Standardized protocol to identify high-risk patients undergoing therapeutic apheresis procedures","volume":"23","author":"Q Lu","year":"2008","journal-title":"J Clin Apheresis"},{"key":"ref37","doi-asserted-by":"crossref","first-page":"1223","DOI":"10.1182\/blood.V96.4.1223","article-title":"How I treat patients with thrombotic thrombocytopenic purpura-hemolytic uremic syndrome","volume":"96","author":"JN George","year":"2000","journal-title":"Blood"}],"container-title":["H\u00e4mostaseologie"],"original-title":[],"language":"de","link":[{"URL":"https:\/\/www.thieme-connect.de\/products\/ejournals\/pdf\/10.5482\/HAMO-12-10-0016.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,1,9]],"date-time":"2024-01-09T10:05:45Z","timestamp":1704794745000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.thieme-connect.de\/DOI\/DOI?10.5482\/HAMO-12-10-0016"}},"subtitle":["A model for clinical research, education and patient care"],"short-title":[],"issued":{"date-parts":[[2013]]},"references-count":35,"journal-issue":{"issue":"02","published-online":{"date-parts":[[2018,2,5]]},"published-print":{"date-parts":[[2013]]}},"URL":"https:\/\/doi.org\/10.5482\/hamo-12-10-0016","archive":["Portico","CLOCKSS"],"relation":{},"ISSN":["0720-9355","2567-5761"],"issn-type":[{"value":"0720-9355","type":"print"},{"value":"2567-5761","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013]]}}}