Hereditary angioedema (HAE) is a rare condition. It causes sudden swelling under the skin and inside the body, like in the belly, throat, or genitals. This swelling happens because of a temporary leak in blood vessels. HAE is classified based on the amount of a protein in the blood called C1 inhibitor (C1-INH): HAE with normal C1-INH levels and HAE with limited or insufficient C1-INH levels (C1-INH deficiency); HAE with C1-INH deficiency can be divided into Type1, with low levels of C1-INH, and Type 2, in which the protein is there, but does not work properly. This study will look at people with HAE Type1 or Type2. The main aim of this study is to describe the diagnosis and management of people with HAE Type1 or HAE Type2 in Egypt. Other aims are to learn more about people with HAE Type1 or Type2, including, but not limited to, other conditions they may have, family history, impact of HAE on daily life, if treatment is stopped and the reasons. During the study, information from already existing data in a participant's medical record will be reviewed and new data will be collected during routine visits of a participant to the study clinic.
Age range
1 Year
Sex
ALL
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Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Age of Participants at Diagnosis (in years) of HAE-C1INH Type1 or Type2
Timeframe: At Day 1
Percentage of Participants With HAE-C1INH Type1 or Type2
Timeframe: At Day 1
Number and Type of First Symptom at Initial Manifestation
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Participants With First Symptom at Initial Manifestation
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Duration of First Symptom at Initial Manifestation
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number and Type of Confirmed Diagnosis of HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Participants With Confirmed Diagnosis of HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Duration of Confirmed Diagnosis of HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Participants with Recorded Diagnostic Test Results for C1-INH Antigenic Level, Serum Complement Component 4 (C4) Level, and C1-INH Functional Level
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Participants Receiving On-demand (OD), Short-term prophylaxis (STP), and Multiple Long-Term Prophylaxis (LTP) Therapies
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Participants who Received Prescriptions for Therapeutic Management With HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Treatment Options Used for the Therapeutic Management of Participants With HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Routes of Administration Used for the Therapeutic Management of Participants With HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Dose Regimens Used for the Therapeutic Management of Participants With HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Participants Switching Treatment for the Therapeutic Management of Participants With HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Participants With Frequency of Treatment Changes for the Therapeutic Management of Participants With HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively
Number of Participants With Reason for Switching Treatment for the Therapeutic Management of Participants With HAE-C1INH Type1 or Type2
Timeframe: Up to 5 months retrospectively, up to 12 months prospectively