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Table 4 Requirements for comprehensive care in the management of hereditary angioedema patients

From: Canadian hereditary angioedema guideline

Best Clinical Treatment outcomes including:
a. A comprehensive care team made up of nurse coordinator, clinician, social worker, data manager, pain management specialist, genetic counsellor, 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.
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
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.
An advisory or oversight board with patient group representation for each clinic
  1. Reference [9].