No intervention: Participants and their caregivers will report home reported outcomes (HRO) data on symptom burden to understand symptom variability and health-related quality of life (HRQoL).
Other treatment: Participants and their caregivers will report HRO data on symptom burden and treatment usage to understand symptom variability and HRQoL.
Iptacopan: Participants and their caregivers will report HRO data on symptom burden and treatment usage to understand symptom variability and HRQoL including those taking iptacopan.
Atrasentan: Participants and their caregivers will report HRO data on symptom burden and treatment usage to understand symptom variability and HRQoL including those taking atrasentan.
Study summary
The study aims to longitudinally capture the full spectrum of symptoms, treatment utilization, and overall health-related quality of life (HRQoL) experienced by Immunoglobulin A nephropathy (IgAN) patients and their caregivers.
Eligibility
Sex
ALL
Min age
18 Years
Max age
—
Healthy volunteers
No
Inclusion Criteria:
* Diagnosis of IgAN, regardless of symptom or treatment history
* Adult aged 18 or older; adult caregiver to an adult patient aged 18 or older; or adult caregiver to a pediatric patient under 18 years of age
* US-based with a proficient understanding of and ability to read the English language
Exclusion Criteria:
None
Primary outcome measure(s)
Number of participants with IgAN specific symptoms — monthly up to month 6 To assess and gain a comprehensive understanding of the patient-reported burden of Immunoglobulin A nephropathy (IgAN) using home-reported outcome (HRO) symptom tracking data. Patients will select from a list of suggested symptoms. The 10 symptoms most frequently reported will be presented and analyzed.
Average self-reported severity of each of these top 10 symptoms — monthly up to month 6 To assess and gain a comprehensive understanding of the patient-reported burden of IgAN using HRO symptom tracking data.
Variability in self-reported severity of each of these top 10 symptoms — monthly up to month 6 To assess and gain a comprehensive understanding of the patient-reported burden of IgAN using HRO symptom tracking data.
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
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