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Table 2 Comprehensive Care Clinics for Hereditary Angioedema - 2010 XII 21

From: Hereditary angioedema: beyond international consensus - circa December 2010 - The Canadian Society of Allergy and Clinical Immunology Dr. David McCourtie Lecture

Comprehensive HAE Clinics will Provide:
1. Best Clinical Treatment outcomes including: a. a comprehensive care team made up of nurse coordinator, clinician, social worker, data manager, pain management specialist, genetic counselor, and administrative support;
b. access to specialized diagnostic testing;
c. access to home treatment;
d. a networked Patient Information System to facilitate product recalls - collect data on therapy outcome measures and safety, and facilitate participation in clinical trials
e. access to clinical advances as they become available;
f. access to 24 hour support;
g. access to up-to-date standards of care, including standardized wallet cards;
h. tracking and intermittent audit of quality outcomes including beneficial and adverse outcomes through secure, comprehensive and networked data management.
2. Education of patients and staff regarding: a. responsible Self/Family Care (home care model) with home and self infusion/administration instruction and support;
b. developments in the cause, diagnosis, treatment, outcomes, and prognosis of HAE
c. changes in the administrative management of the clinic
3. An environment conducive to research including: a. access to and support for clinical trials of new treatments;
b. access to and support for translational research in diagnosis and prognosis;
c. access to and support for psychosocial research such as quality of life studies.
4. An advisory or oversight board with patient group representation for each clinic
  1. (Modified by permission from: - comprehensive care clinics)
  2. Comprehensive Patient Care Clinics: Clinical care, Education, and Research
  3. Comprehensive care for HAE is based on the recognition that HAE is a chronic disease and care is complex, requiring a highly specialized and multidisciplinary approach. A comprehensive care clinic must provide accountability for in-hospital and home use of expensive and potentially toxic treatments, track outcomes (both beneficial and adverse), and develop and meet Standards of Care for HAE.