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

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