Study Details
Expanding Web-Based Resources for People with Autosomal Recessive Polycystic Kidney Disease
(IRB#: IRB_00124267)
Autosomal recessive polycystic kidney disease (ARPKD) is a rare inherited disorder. It is part of the Hepato/Renal fibrocystic disease group that affects the kidneys. The study will view past, current, and future medical information once given permission. The study wants to expand web-based resources so anyone can learn about ARPKD or other hepato/renal fibrocystic diseases.
- All genders
- All Ages
- Healthy Volunteers
- In Person
- Unpaid
Who can participate?
Gender: All genders
Age: All Ages
Volunteers: Healthy Volunteers
Location: In Person
Inclusion Criteria
- Ages 0 to 17 years old and those who turn 18 in the study can stay in the study until 21 years old
- Diagnosed with ARPKD or other hepato-renal fibrocystic disease
Exclusion Criteria
- Other health conditions that suggest a diagnosis other than recessive hepato-renal fibrocystic diseases
Will I be paid for my time?
No
IRB#: IRB_00124267
PI: Raoul Nelson
Department: PEDIATRICS
Approval Date: 2020-05-27 06:00:00
Specialties: Pediatric Nephrology