Sciensus
London, W2 6LA, United Kingdom
NCT Number: NCT05489640
The main aim of this study is to describe the treatment patterns, characteristics and outcomes of people with HAE who are currently receiving icatibant in the homecare setting in the United Kingdom (UK).
Participants will be treated with icatibant according to their routine practice via homecare service for icatibant within the UK. Data will be directly collected from participants via study diaries and questionnaires. Participants will be contacted approximately every 90 days during study duration (this can occur via phone or as a face-to-face visit).
Looking for future studies?
Notify Me18 year and older
All sexes
Observational
London, W2 6LA, United Kingdom
Healthy volunteers accepted: No
Only the study team can determine whether someone qualifies for participation.
Inclusion criteria
Exclusion criteria
No Intervention will be administered in this study.
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
Time frame: Baseline Period [3 months prior to Index (day of the first homecare telephonic consultation/visit)]
Demographic characteristics will include age at index (categories: 18-29, 30-39, 40-49, 50-59, 60+ years), sex (male, female, non-binary), and ethnic group.
Time frame: At Index (day of the first homecare telephonic consultation/visit)
Clinical characteristics will include patient reported HAE type (Type I or Type II), categories of duration (participant's self-administration of icatibant at home and time since HAE diagnosis) at index, comorbidities, prior HAE related concomitant medication details, categories of details of deaths during the study observation period.
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
Rate of new HAE attacks and rate of new HAE attacks that required treatment in homecare setting will be recorded as number of HAE attacks per participant per month. Data would be reported for pre-defined time-period categories as follows:
between index to month 3, between month 3 to 6, month 6 to 9 and month 9 to 12.
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
Frequency of visits to Accident and Emergency Services related to an HAE attack will be defined as number of visits to Accidents and Emergency Services during pre-defined time period. Data would be reported for pre-defined time-period categories as follows: between index to month 3, between month 3 to 6, month 6 to 9 and month 9 to 12.
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
The summary data for time (in hours) from the start of each HAE attack to administration of icatibant in the homecare setting will be reported.
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
The summary data for number of icatibant administration following start of each HAE attack during the predefined time period will be reported.
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
Treatment patterns will include assessment of number of participants by treatment dose received for HAE attack and average dose per participant received post-index.
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
Treatment management patterns will include assessment of number of participants by discontinuations of icatibant treatment and reasons for discontinuation (this would be assessed for participants who received prophylaxis treatment during the study), number of face-to-face and telephone-based homecare consultations.
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
The EQ-5D-5L questionnaire will be used to record impact of HAE on participant's quality-of-life (QoL). The EQ-5D-5L is a descriptive system of Health-Related Quality-of-Life (HRQoL) states consisting of 5 dimensions (mobility, self-care, usual activities, pain/discomfort, anxiety/depression), each of which can take 1 of 5 responses. The responses record 5 levels of severity [no problems, slight problems, moderate problems, severe problems, and extreme problems] within a particular dimension. The scores will be the sum of scores from each dimension and can range from 5 (no problems) to 25 (extreme problems).
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
The Angioedema Quality of Life (AE-QoL) includes 17 items and 4 domains: functioning, fatigue/mood, fears/shame, and food. Raw scores from each domain will be linearly transformed to a total score of 0 to 100, with higher scores indicating a stronger impairment.
Time frame: Up to 12 months from Index (day of the first homecare telephonic consultation/visit)
The AECT is used to assess participants with recurrent angioedema. The test uses a questionnaire with 4 items, each of which has 5 options and is used to measure the participant's current disease control. HAE control score will be recorded with 5 levels of answers [1=very often, 2=often, 3=sometimes, 4=seldom, 5=not at all] to the following questions: 1) In the last 3 months, how often have you had angioedema? 2) In the last 3 months, how much has your QoL been affected by angioedema? 3) In the last 3 months, how much has the unpredictability of your angioedema bothered you? 4) In the last 3 months, how well has your angioedema been controlled by your therapy? The total scores are the sum of individual scores from 4 items and will range from 4 (Very often) to 20 (not at all). Higher scores will indicate no recurrence.
Takeda
Industry
A Real-World Study to Determine Patient Characteristics, Treatment Patterns, Clinical and Patient-Reported Outcomes of Patients With Hereditary Angioedema That Self-Administered Icatibant Using Homecare Services in the UK
OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.
View the official ClinicalTrials.gov record (opens in a new tab)This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.
Published trials that share one or more normalized conditions with this study.
NCT07251933
Angioedema, Angioedemas, Hereditary
La Plata, Buenos Aires, Argentina
View Trial DetailsNCT05509569
Angioedema, Angioedemas, Hereditary
Tokyo, Japan
View Trial DetailsNCT05819775
Angioedema, Angioedemas, Hereditary
Litchfield Park, Arizona, United States
View Trial DetailsNCT06806618
Angioedema, Angioedemas, Hereditary
Grenoble, France
View Trial Details