MyKidneyHealth
Spring 2020 Newsletter
Your Impact on MyKidneyHealth
Your Participation Is Making A Difference!
Last month, the MyKidneyHealth study reached an important milestone: all of our participants have passed the 18 month mark. Now, many are on their way to completing the study or have already done so!

We know each survey you complete adds to our understanding of children's and teens' experiences living with CKD,  which is a key component to improving clinical care and patients' quality of life.
 
The MyKidneyHealth survey questions collect information about you or your child through Patient Reported Outcomes (PROs). PROs are any report of a patient’s health status that comes from the patient themselves. For pediatric patients, parents can also report on their child’s health. PROs are important because, according to the National Institutes for Health, they “inform and guide patient-centered care as well as clinical and health policy decision-making.” You can read more about PROs here .
Curiosity Drives Innovation
Check out this video, which presents profound scientific discoveries born from curiosity!

Scientific breakthroughs start with a question that guides the whole course of the investigation. For the MyKidneyHealth study, we want to understand how patients' and their parents' self reports of physical, emotional, and mental well-being relate to disease severity for children with chronic kidney disease.

Every survey you complete contributes to our understanding, so every survey matters!
Stay Tuned!
Our study team is continuing to collect data for the final upcoming surveys, and we’ll be sharing our findings with you soon!
Together, you've completed 2,666 surveys!
Keep up the great work!
Still have a final survey to complete?
Be sure to complete it as soon as you receive it!
Social Distancing Resources
Looking for ways to get your family moving together?
Try some of these resources!

For adults: Good Housekeeping complied a full list of many studios and gyms across the country that are offering free workouts and resources.

For kids: Whether your kids just want to move , do some yoga , or dance it out , there are plenty of resources available for them too!
Try some of these resources to get your kids reading, or start your own Zoom book club in order to stay connected with friends and family through an activity!

For adults: Reese Witherspoon's list has some amazing adventure, mystery, and socially relevant books for everyone!

For kids: This list has a variety of books for children 2-17-years-old!

For Book Club: This list complied some of the best book club books for this year!
If you get BINGO, post your board on Instagram and tag us @mykidneyhealthstudy
Here are some ideas for creative and fun family activities!
Get Outside! Lay down some painter's tape, grab that chalk, and make your own stained glass window !

Who needs Jeopardy when you have Kahoot ! Create a Kahoot or use a pre-made one to do family trivia night! Another option is to use PowerPoint and keep the answers tech-free by using dry erase boards or paper!

A great game to play with the whole family is Fishbowl ! It combines Charades, Password, and Taboo!
Tired of looking at your living room? Check out famous museums that are offering virtual tours !

Go to the Georgia Aquarium and look at the live webcams of your favorite aquatic creatures! The Cincinnati Zoo also offers a live stream if you want to stay on land!

Join Global Citizen's #togetherathome campaign and watch a free virtual concert from some amazing artists!
Study Payment Reminders
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.

  • Calling to set up a PIN or want to find out your balance? You may need the generic date of birth.

  • Making an online purchase using your card? You may need the generic billing address.

  • If you need the generic birthdate or address call, text or email us!
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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.
If you have any questions about your ClinCards, email [email protected] , and we can help!
Contact the MyKidneyHealth Study Team
Call or text: (267) 528-3689 | Email: [email protected]

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!
Facebook ‌ Instagram ‌
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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