Table 4 Requirements for comprehensive care in the management of hereditary angioedema patients [9]

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