MyKidneyHealth Spring 2019 Newsletter

My Kidney Health

Spring 2019 Newsletter

Your involvement in MyKidneyHealth matters!

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.

Study Payment Reminders

We've gotten a lot of questions about payments lately. Below are answers to the ones we hear most often!

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!

Still have questions? Contact 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!

Contact the MyKidneyHealth Study Team

Call or text: (267) 528-3689 | Email: KidneyHealthStudy@email.chop.edu

Do you follow us on social media yet? Now is the time to start.

We're sharing lots of info, including study updates. Plus, when results are ready, we'll share those there too!

MyKidneyHealth Partner Sites

Cincinnati Children's Hospital Medical Center in OH; Children's Hospital of Philadelphia in PA; Children's Mercy in KS; Children's Healthcare of Atlanta in GA; Johns Hopkins Children's Center in MD; Levine Children's Hospital in NC; OHSU Doernbecher Children's Hospital in OR; Riley Children's Health in IN; Seattle Children's Hospital in WA; UCLA Mattel Children's Hospital in CA; Childrens of Alabama in AL; Nationwide Children's Hospital in OH; Winnipeg Children's Hospital in Canada; St. Louis Children's Hospital in MO; Cleveland Clinic Children's in OH; and Michigan Children's in MI

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