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MyKidneyHealth

Welcome to our page!

  This study is using pediatric Patient-Reported Outcomes (PROs) to measure health, functioning and wellbeing of children with CKD.

WHAT PARTICIPANTS SAY

"The questionnaires were great fodder for conversations with our son-Thank you!" 

 

—    CHOP Particpant P41

Meet Our Team

Chris Forrest, MD, PhD

Principal Investigator

Julia Schuchard PhD

Study Director

Cortney Bruno, MSW

Study Coordinator

Tyler Kelly

Research Assistant

Sofia Arruda

Research Assistant

Christmas Cotter

Research Assistant

Purpose

The MyKidneyHealth study follows youth and their parents over a 2-year period to understand how their reports of fatigue, sleep, stress and life satisfaction change in relation to their health status. 

 

Our goal is that in the future, more doctors will use PRO questionnaires with pediatric patients and family members to better understand patients' wellbeing and quality of life. The responses from the PROs will be used by doctors to shape and guide the patient's medical treatment.

 

This study includes over 200 children aged 8-21 and their parents. Your participation is helping us reach that goal!

What to expect in the MyKidneyHealth Study

Parents and youth (ages 8-21) will complete a total of 7 questionnaires over the span of 2 years. Here is our current progress!

Baseline

424/424

3 Month

400/424

6 Month

406/424

12 Month

388/424

15 Month

388/424

18 Month

322/424

24 Month

88/424

You have all been in the study for at least 15 months. Almost all of you have completed these surveys!

But there are still more to go! How many surveys you have left depends on when you joined the study.

You will also receive questionnaire reminders, gift card information, health tips and information. 

Participants from US sites, here are some reminders about your ClinCards:

  • We use a generic date of birth and billing address on all of our participants' ClinCard accounts.

  • You may need the generic date of birth if you call the number on your card to set up a PIN for your card or to find out your balance.

  • You may need the generic billing address if you make an online purchase using your card.

  • If you need the generic birthdate or email address call, text or email us!

Winnipeg participants, your payments work differently:

  • Instead of a gift card, you receive a check each year you are in the study (once after completing your 12 month follow-up and once at the conclusion of the study).

  • That one check includes payment for each survey you completed over the year.

  • You can receive payment for you and your child together or separately.

  • Any questions about payment? Call, text or email!

GET IN TOUCH

We will be contacting you throughout the study with updates about gift cards and study findings. Please don't hesitate to contact us with your questions! 

215-528-3689

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