Résumé
C1 esterase inhibitor (C1-INH) deficiency is a rare disorder that lacks consensus for diagnosis therapy and management. Recognizing that Canada is behind the European approach to this disorder, we have formed the Canadian Hereditary Angioedema Society (CHAES)/Société d'angioé dème héréditaire du Canada (SAHC) to foster knowledge of this disorder in Canada and to advance care of patients with this disorder in Canada. We here present a review of treatment of this disorder in Canada including prevention of angioedema events and use of replacement therapy and present an algorithm for diagnosis therapy and management of C1-INH deficiency in Canada for discussion at our International Conference on Hereditary Angioedema to be held in Toronto, Canada, October 24th to 26th, 2003.
Langue d'origine | English |
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Pages (de-à) | 205-214 |
Nombre de pages | 10 |
Journal | Transfusion and Apheresis Science |
Volume | 29 |
Numéro de publication | 3 |
DOI | |
Statut de publication | Published - déc. 2003 |
Note bibliographique
Funding Information:Canadian Hematology Society/Société Canadienne d’Hematologie Canadian Hereditary Angioedema Society/Société d’angioedème héréditaire du Canada International Conference on Management of Hereditary Angioedema and Canadian Clinic Networking Launch for: Primary Immune Deficiencies, Hereditary Angioedema, and Rare Blood Disorders October 24th to 26th, 2003, Toronto, Canada Radisson Plaza Hotel Admiral, Harbourfront Partners/Sponsors: Health Canada/Santé Canada Canadian Institutes of Health Research (CIHR) Institute of Infection and Immunity Specialized Systems for Blood and Immunology (SSBI) Canadian Hematology Society (CHS), Canadian Apheresis Group (CAG) Canadian Hereditary Angioedema Society (CHAES) Canadian Immunodeficiencies Patient Organization (CIPO) Canadian Blood Services (CBS), Héma-Québec (HQ) Canadian Society of Allergy and Clinical Immunology (CSACI) University of Calgary (U of C), Canadian Society for Immunology (CSI) Anemia Institute for Research & Education (AIRE) Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC) Aventis Behring, Baxter, Bayer, Dyax This event is an Accredited Group Learning Activity as defined by the Maintenance of Certification Program of the Royal College of Physicians and Surgeons of Canada. Physicians may claim up to 17.0 h under Section 1. Canadian Hematology Society/Société Canadienne d’Hematologie Canadian Hereditary Angioedema Society/ Société d’angioedème héréditaire du Canada Specialized Systems for Blood and Immunology Canadian International Conference on Management of Hereditary Angioedema Friday, October 24th Morning Symposium: Complement for the Hematologist Chairperson––Dr. Armand Keating, CHS President Elect 8:30 Introduction––Dr. Gail Rock, CHS President 8:30–8:45 Introduction––complement disorders including hereditary angioedema––Canadian perspective Dr. Tom Bowen, Canada 8:45–9:25 Complement cascade and deficiency states: genes to animal models and up to man Dr. Alvin Davis III, USA 9:25–10:05 Human complement disorders excluding hereditary angioedema Dr. Jerry Winkelstein, USA 10:05–10:45 Human complement disorders––hereditary angioedema––kinins, bradykinins, kallikrein interactions Dr. Bruce Zuraw, USA 10:45–11:00 Refreshment break 11:00–12:30 Abstract presentations––CHS Lunch Afternoon Symposium: Launch of the SSBI Canadian Clinic Network for Primary Immune Deficiencies, Hereditary Angioedema, and Rare Blood Disorders Chairpersons––Dr. Jacques Hébert, Dr. Tom Bowen 13:15–13:50 Experience of the IDF NIH PID data base registry & collaboration Dr. Jerry Winkelstein, IDF, USA 13:50–14:25 The Canadian Apheresis Group registry experience––collaborative IVIG study proposal(s) Dr. Gail Rock, Canada 14:25–15:00 International hereditary angioedema data base registry Dr. Marco Cicardi, Italy 15:00–15:15 Refreshment break 15:15–15:50 The Canadian Hemophilia Clinic Group experience––collaborative hemovigilance protocol proposal Dr. Bruce Ritchie, Canada 15:50–16:25 Canadian PID, HAE, rare blood disorders data bases and registries national transfusion transmitted injuries surveillance system (TTISS) in Canada––a review Health Canada proposals Dr. Antonio Giulivi, Canada 16:25–17:00 SSBI––clinic launch summation discussion––so what now? Where Now? Website––physician discussion patient management––next meeting? Dr. Tom Bowen, Jacques Hébert, Bruce Ritchie, Antonio Giulivi––Canada 17:00–18:30 Annual Meeting: Canadian Hematology Society 17:00–18:30 Annual Meeting: Specialized Systems for Blood and Immunology Annual Meeting and Elections: Canadian Hereditary Angioedema Society Saturday, October 25th Canadian International Conference on Management of Hereditary Angioedema Morning Session: Chairpersons: Jeanne Burnham/Denise Ommanney 8:15–8:30 Introduction & Welcome––Jeanne Burnham, President, CHAES Dr. Tom Bowen and Dr. Jacques Hébert, MSAC, CHAES 8:30–9:15 The complement cascade––HAE––overview Dr. Alvin Davis, USA 9:15–10:00 Kallikrein inhibitors––USA HAE experience Dr. Bruce Zuraw, USA 10:00–10:15 Nutrition break Chairpersons: Dr. Richard Warrington, Denise Ommanney 10:15–10:45 Estrogen-dependent inherited angioedema Dr. Karen Binkley, Canada 10:45–11:30 Role of antifibrinolytics in HAE Dr. Bruce Ritchie, Canada 11:30–12:15 Hormones and HAE Dr. Lorenza Zingale, Italy 12:15–13:00 Lunch Afternoon Session: Chairpersons: Dr. Bill Yang, Harriet Lyons 13:00–14:00 The Italian experience––European initiatives Dr. Marco Cicardi, Italy 14:00–14:45 The Frankfurt HAE experience Dr. Emel Aygoren-Pursun, Dr. Inma Martinez, Dr. Wolfhard Kreuz, Germany 14:45–15:30 The German HAE experience––European initiatives Dr. Konrad Bork, Germany 15:30–15:45 Nutrition break Chairpersons: Dr. Bruce Ritchie, Suzanne Benoit 15:45–16:30 The Hungarian HAE experience Dr. Henriettte Farkas, Dr. Lillian Varga, Hungary 16:30–16:45 The Quebec experience Dr. Jacques Hébert, Canada 16:45–17:00 Day summary and introduction to Consensus Conference Dr. Tom Bowen, Dr. Jacques Hébert, Canada Banquet Sunday, October 26th Canadian Consensus Conference on the Treatment of HAE 09:00–09:20 DX-88 and HAE; a developmental perspective Dr. Anthony Williams, Dyax 09:20–09:50 Safety and efficacy of pasteurized C1 inhibitor concentrate (Berinert ® P) in hereditary angioedema: a review Dr. Jean De Serres, Aventis Behring 09:50–10:30 Round table discussion and discussion of algorithms for the diagnosis, therapy and management of HAE International speakers from Friday and Saturday sessions, clinic physicians and staff members, HAE patients 10:30–10:45 Nutrition break 10:45–11:45 Consensus document discussion All 11:45–12:00 Closing discussion and summary––what next? Dr. Tom Bowen, Dr. Jacques Hébert, Dr. Bruce Ritchie, Jeanne Burnham Scientific Program Committee/Comité du Programme Scientifique Dr. Tom Bowen (Chair) Jeanne Burnham (CHAES president) Tina Morgan (CIPO president) Dr. Jacques Hébert Dr. Gail Rock Dr. Armand Keating Dr. Bruce Ritchie Dr. Bruce Mazer Dr. Richard Warrington Dr. Mike MacSween Dr. Bill Yang Dr. Alvin Davis Dr. Antonio Giulivi You are never given a dream without also being given the power to make it true. (Richard Bach, Writer) Imagination is more important than knowledge. Knowledge is limited. Imagination encircles the world. (Albert Einstein 1879–1955, Physicist)
ASJC Scopus Subject Areas
- Hematology