The oklahoma thrombotic thrombo - cytopenic purpura-haemolytic uraemic syndrome registry a model for clinical research, education and patient care

Hamostaseologie

Volumn 33, Issue 2, 2013, Pages 105-112

  George, J N ^a   Vesely, S K ^a   Terrell, D R ^a   Deford, C C ^a   Reese, J A ^a   Al Nouri, Z L ^a   Stewart, L M ^a   Lu, K H ^a   Muthurajah, D S ^a  

^a UNIVERSITY OF OKLAHOMA COLLEGE OF MEDICINE   (United States)

Author keywords

Cohort studies; Rare disorders; Thrombotic thrombocytopenic purpura; TTP HUS

Indexed keywords

RITUXIMAB; VON WILLEBRAND FACTOR; VON WILLEBRAND FACTOR CLEAVING PROTEINASE;

ARTICLE; CLINICAL FEATURE; CLINICAL RESEARCH; DISEASE REGISTRY; FOLLOW UP; HEALTH CARE QUALITY; HEMOLYTIC UREMIC SYNDROME; HIGH RISK PATIENT; HUMAN; HYPERTENSION; KIDNEY BIOPSY; MEDICAL DOCUMENTATION; MEDICAL EDUCATION; PATIENT CARE; PLASMAPHERESIS; SYSTEMIC LUPUS ERYTHEMATOSUS; THROMBOCYTE TRANSFUSION; THROMBOTIC THROMBOCYTOPENIC PURPURA; UNITED STATES; FACTUAL DATABASE; FEMALE; INTERNATIONAL COOPERATION; MALE; PREVALENCE; REGISTER; REVIEW; RISK FACTOR; STATISTICS; SURVIVAL RATE; HEMOLYTIC-UREMIC SYNDROME; PURPURA, THROMBOTIC THROMBOCYTOPENIC; STATISTICS AND NUMERICAL DATA;

DATABASES, FACTUAL; FEMALE; HEMOLYTIC-UREMIC SYNDROME; HUMANS; INTERNATIONALITY; MALE; OKLAHOMA; PREVALENCE; PURPURA, THROMBOTIC THROMBOCYTOPENIC; REGISTRIES; RISK FACTORS; SURVIVAL RATE;

EID: 84881532348     PISSN: 07209355     EISSN: None     Source Type: Journal    
DOI: 10.5482/HAMO-12-10-0016     Document Type: Article

References (37)

1. Rock GA, Shumak KH, Buskard NA et al. Comparison of plasma exchange with plasma infusion in the treatment of thrombotic thrombocytopenic purpura. New Eng J Med 1991; 325: 393-397.
2. Swisher KK, Terrell DR, Vesely SK et al. Clinical outcomes after platelet transfusions in patients with thrombotic thrombocytopenic purpura. Transfusion 2009; 49: 873-887.
3. Vesely SK, George JN, Lämmle B et al. ADAMTS13 activity in thrombotic thrombocytopenic purpura-hemolytic uremic syndrome: relation to presenting features and clinical outcomes in a prospective cohort of 142 patients. Blood 2003; 101: 60-68.
4. Furlan M, Robles R, Galbusera M et al. Von Willebrand factor-cleaving protease in thrombotic thrombocytopenic purpura and the hemolyticuremic syndrome. New Engl J Med 1998; 339: 1578-1584.
5. Tsai HM, Lian ECY. Antibodies to von-Willebrand factor-cleaving protease in acute thrombotic thrombocytopenic purpura. New Eng J Med 1998; 339: 1585-1594.
6. Clark WF, Garg AX, Blake PG et al. Effect of awareness of a randomized controlled trial on use of experimental therapy. JAMA 2003; 290: 1351-1355.
7. Terrell DR, Williams LA, Vesely SK et al. The incidence of thrombotic thrombocytopenic purpurahemolytic uremic syndrome: all patients, idiopathic patients, and patients with severe ADAMTS13 deficiency. J Thromb Haemost 2005; 3: 1432-1436.
8. Terrell DR, Vesely SK, Kremer Hovinga JA et al. Different disparities of gender and race among the thrombotic thrombocytopenic purpura and hemolytic- uremic syndromes. Am J Hematol 2010; 85: 844-847.
9. Johnson KK, Duvall D, Gilcher RO et al. The Oklahoma Thrombotic Thrombocytopenic Purpura- Hemolytic Uremic Syndrome Registry: a community service. J Okla State Med Assoc 2007; 100: 273-278.
10. Howard MA, Duvall D, Terrell DR et al. 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. J Clin Apheresis 2003; 18: 16-20.
11. Ambadwar P, Duvall D, Wolf NJ et al. Support groups for patients who have recovered from thrombotic thrombocytopenic purpura. J Clin Apheresis 2008; 23: 168-169.
12. Lewis QF, Lanneau MS, Mathias SD et al. Longterm deficits in health-related quality of life following recovery from thrombotic thrombocytopenic purpura. Transfusion 2009; 49: 118-124.
13. Kennedy KA, Lewis QF, Scott JG et al. Cognitive deficits after recovery from thrombotic thrombocytopenic purpura. Transfusion 2009; 49: 1092-1101.
14. Deford CC, Schwartz LH, Perdue JJ et al. Severe depression following recovery from thrombotic thrombocytopenic purpura. Blood 2012; 120: Abstract in press.
15. Kremer Hovinga JA, Vesely SK, Terrell DR et al. Survival and relapse in patients with thrombotic thrombocytopenic purpura. Blood 2010; 115: 1500-1511.
16. Vesely SK, Li X, McMinn JR et al. Pregnancy outcomes after recovery from thrombotic thrombocytopenic purpura-hemolytic uremic syndrome. Transfusion 2004; 44: 1149-1158.
17. George JN, Vesely SK, James JA. Overlapping features of thrombotic thrombocytopenic purpura and systemic lupus erythematosus. Southern Med J 2007; 100: 512-514.
18. Reese JA, Al-Nouri ZL, Deford CC et al. Mortality and morbidities during long-term follow-up after recovery from thrombotic thrombocytopenic purpura. Blood 2012; 120: Abstract in press.
19. George JN, Woodson RD, Kiss JE et al. 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. J Clin Apheresis 2006; 21: 49-56.
20. Kiss JE. Randomized clinical trials in thrombotic thrombocytopenic purpura: where do we go from here? Transfusion 2006; 46: 1659-1662.
21. George JN, Kremer Hovinga JA, Terrell DR et al. The Oklahoma Thrombotic Thrombocytopenic Purpura-Hemolytic Uremic Syndrome Registry: the Swiss Connection. Eur J Haematol 2008; 80: 277-286.
22. Froehlich-Zahnd R, George JN, Vesely SK et al. Evidence for a role of anti-ADAMTS13 autoantibodies despite normal ADAMTS13 activity in recurrent thrombotic thrombocytopenic purpura. Haematologica 2012; 97: 297-303.
23. George JN. How I treat patients with thrombotic thrombocytopenic purpura - 2010. Blood 2010; 116: 4060-4069.
24. George JN, Al-Nouri ZL. Diagnostic and therapeutic challenges in the thrombotic thrombocytopenic purpura and hemolytic uremic syndromes. Hematology Am Soc Hematology Educ Program 2012, in press.
25. Amorosi EL, Ultmann JE. Thrombotic thrombocytopenic purpura: report of 16 cases and review of the literature. Medicine 1966; 45: 139-159.
26. George JN, Gilcher RO, Smith JW et al. Thrombotic thrombocytopenia purpura-hemolytic uremic syndrome: Diagnosis and management. J Clin Apheresis 1998; 13: 120-125.
27. Johnson KK, Terrell DR, Vesely SK, George JN. The Oklahoma Thrombotic Thrombocytopenic Purpura- Hemolytic Uremic Syndrome Registry: a resource for medical education. J Okla State Med Assoc 2007; 100: 309-314.
28. Rizvi MA, Vesely SK, George JN et al. Complications of plasma exchange in 71 consecutive patients treated for clinically suspected thrombotic thrombocytopenic purpura-hemolytic uremic syndrome. Transfusion 2000; 40: 896-901.
29. McMinn JR, Thomas IA, Terrell DR et al. Complications of plasma exchange in patients treated for clinically suspected thrombotic thrombocytopenic purpura-hemolytic uremic syndrome: an additional study of 78 consecutive patients. Transfusion 2003; 43: 415-416.
30. Howard MA, Williams LA, Terrell DR et al. 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. Transfusion 2006; 46: 154-156.
31. Nguyen L, Terrell DR, Duvall D et al. Complications of plasma exchange in patients treated for thrombotic thrombocytopenic purpura. IV. An additional study of 43 consecutive patients, 2005-2008. Transfusion 2009; 49: 392-394.
32. Som S, Deford CC, Kaiser ML et al. Decreasing frequency of plasma exchange complications in patients treated for thrombotic thrombocytopenic purpura- hemolytic uremic syndrome, 1996-2011. Transfusion 2012; 52: 2525-2532.
33. Sutton DMC, Nair RC, Rock G, The Canadian Apheresis Registry Study Group. Complications of plasma exchange. Transfusion 1989; 29: 124-127.
34. Rock GA, Clark WF, Sutton DM, Members of the CAG and CAAN. The Canadian Apheresis Registry. Transfusion and Apheresis Science 2003; 29: 167-177.
35. Shemin D, Briggs D, Greenan M. Complications of therapeutic plasma exchange: a prospective study of 1727 procedures. J Clin Apheresis 2007; 22: 270-276.
36. Lu Q, Nedelcu E, Ziman A et al. Standardized protocol to identify high-risk patients undergoing therapeutic apheresis procedures. J Clin Apheresis 2008; 23: 111-115.
37. George JN. How I treat patients with thrombotic thrombocytopenic purpura-hemolytic uremic syndrome. Blood 2000; 96: 1223-1229.