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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.

I AM INTERESTED

  • 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

For more information contact:

JoAnn Narus

JoAnn.Narus@hsc.utah.edu

  801-585-7497

IRB#: IRB_00124267

PI: Raoul Nelson

Department: PEDIATRICS

Approval Date: 2020-05-27 06:00:00

Specialties: Pediatric Nephrology

Last Updated: 6/8/23