Assessment of Health-related Quality of Life in Primary Hyperoxaluria
Overview
Tab Title Description
Study type
ObservationalDescribes the nature of a clinical study. Types include:
- Observational study — observes people and measures outcomes without affecting results.
- Interventional study (clinical trial) — studies new tests, treatments, drugs, surgical procedures or devices.
- Medical records research — uses historical information collected from medical records of large groups of people to study how diseases progress and which treatments and surgeries work best.
Study IDs
Site IRB
- Rochester, Minnesota: 21-005380
About this study
The purpose of this study is to assess the burden that patients and their caregivers face to due primary hyperoxaluria (PH).
Participation eligibility
Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.
Inclusion Criteria:
- Subject is an adult patient (age ≥ 18 years) diagnosed with PH or is a parent or caregiver for a child (age 5-17 years) diagnosed with PH.
- Subject lives in the US.
- Adult subject (age ≥ 18 years) or child (age 5-17 years) with PH is currently treating or managing their PH.
- Adult subject (age ≥ 18 years) or child (age 5-17 years) with PH has seen a doctor for PH in the past 12 months.
- Subject is willing and able to answer questions via the web and automated voice response system.
Exclusion Criteria:
- Subject with PH has had a liver or kidney and liver transplant.
- Subject is currently enrolled in a clinical trial for PH, or will be enrolled prior to administration of the survey.
- Subject with PH is < 5 yrs old.
Participating Mayo Clinic locations
Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.
| Mayo Clinic Location |
Status |
|
Rochester, Minn.
Mayo Clinic principal investigator John Lieske, M.D. |
Closed for enrollment |
|
More information
Publications
Publications are currently not available