Retention is at 95%

😲 YOU ROCK!

Let's keep it up!

This is a great retention rate! In research, retention refers to whether or not participants stay in a study. Sticking around is important in longitudinal studies like MyKidneyHealth. (Longitudinal means they take place over time).

When you complete all your surveys on time, you enable us to compare your experiences to others at consistent intervals. This is important because researchers and medical professionals are very interested in how youth’s experiences may change as their health improves, worsens, or stays the same over time.

A Nephrologist's Perspective on MyKidneyHealth

Dr. Sandra Amaral explains why the MyKidneyHealth study is important to her as a pediatric nephrologist.

" The MyKidneyHealth study will help us understand what living with chronic kidney disease is like from the perspective of the child and parent.

What are the things my patients and parents are worried about? What kinds of symptoms or side effects interfere with them having fun or doing well in school?

This kind of information helps me as a doctor to tailor my treatment plans so that my patients can lead their best and healthiest life. "

Dr. Amaral is a pediatric nephrologist at Children's Hospital of Philadelphia, one of the 16 hospitals that partner on the MyKidneyHealth study.

What is a PRO?

PRO stands for Patient Reported Outcomes. It's what we're measuring in the surveys you complete.

A PRO is a measure of a patient's experience in their own words.

For pediatric patients, parents can also sometimes report on behalf of their child, like we've asked parents to do in MyKidneyHealth.

About the MyKidneyHealth Study

For some of you, it's been as long as 18 months since you joined the MyKidneyHealth study! We are so glad you've stayed committed for so long, and we want to remind you why your continued participation is so important.

The purpose of MyKidneyHealth is to understand how quality of life, from the perspective of youth and their parents, changes in relation to health status over time.

 That's why we ask you to complete six follow-up surveys over a two-year period. The surveys collect patient reported outcomes (PROs) measuring things like fatigue, sleep, stress, and life satisfaction. At the end of the study, we'll look at these PRO measures in relation to the youth participants' health status.