The Iranian Hereditary Angioedema Registry (IHAR) was implemented by IAARI in 2006, with the purpose of nationwide identification, collection and registration of data on hereditary angioedema patients.

Goals

  1. To raise awareness of the healthcare community of the clinical presentations of hereditary angioedema (HA) in order to facilitate earlier diagnostic, preventive and therapeutic measures.
  2. To provide accurate statistics on HA patients.
  3. To follow-up on HA patients by providing access to their clinical and research information.
  4. To facilitate basic, clinical and epidemiological research in order to minimize life-threatening risk factors and promote health and life quality in HA patients.
  5. Scientific cooperation with domestic and international research and educational organizations in compliance with applicable laws and regulations.
  6. To raise community awareness about HA.
  7. To inspire and motivate researchers interested in the field of HA.

Methods

  1. Patients are referred to IAARI by their physicians from all over the country.
  2. HA questionnaire are filled for each patient by trained physicians.
  3. Patients are visited and examined by a clinical allergist / immunologist who is also a faculty member.
  4. Special confirmatory tests are performed to classify the disease.
  5. Another appointment with the patients after the lab results are out.
  6. After the clinical and paraclinical assessments, definitive diagnosis will be made
  7. C1-Inhibitor functional assay to diagnose type II HA, which receives many referrals from healthcare professionals around the country.

Once the case is confirmed

The new patients’ data, including demographic, clinical and laboratory data will be registered in the database.

The data is used accordingly for statistical analysis and to educate patients and their families about the nature of their disease and the actions they have to take in case of any life-threatening incident. Patients will also receive a special card describing their conditions and how to act in cases of emergency.

Patients will be followed up by phone calls or regular visits as well.

 To keep the format in line with the rest of the databases, I omitted the part on the definition of HA.