Clinical Study
Autosomal Dominant Polycystic Kidney Disease Health Information Study
Autosomal Dominant Polycystic Kidney Disease is the most common genetic cause of renal failure (kidneys unable to remove waste and fluid in the body). Autosomal Dominant Polycystic Kidney Disease has been typically known as an adult disease. However, it is becoming known as a disease that begins in childhood. Guidelines for how to help children diagnosed with or at risk for Autosomal Dominant Polycystic Kidney Disease are lacking. The study wants to learn more about Autosomal Dominant Polycystic Kidney Disease and other kidney diseases. The study also wants to expand internet resources so anyone can learn about Autosomal Dominant Polycystic Kidney Disease or other hepato/renal fibrocystic diseases that affect the kidneys. Being in this study does not require attending a visit to a study clinic. Participation does require giving permission for the study team to have access to participants' medical information. Some information that could be collected, would be clinic notes, lab results, and physician consult reports. Participants' names and addresses will be removed from all health information the study team receives.
For more information contact:
JoAnn Narus
joann.narus@hsc.utah.edu
801-585-7497
IRB#: IRB_00142152
| PI: Raoul Nelson
| Department: PEDIATRICS
| Approval Date: 2021-11-09 22:57:00
Specialties: Pediatric Nephrology
Who can participate?
Gender: All
Age: All Ages
Volunteers: Volunteers with special conditions
Location: In Person
Inclusion Criteria:
- Children of all ages up to 17 years old diagnosed with Autosomal Dominant Polycystic Kidney Disease
- Participants who turn 18 years old during the study may still participate
Exclusion Criteria:
- Patients with Autosomal Dominant Polycystic Kidney Disease along with other health conditions that suggest a diagnosis other than Autosomal Dominant Polycystic Kidney Disease
Will I be paid for my time?
No