"The questionnaires were great fodder for conversations with our son-Thank you!"
CHOP Particpant P41
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"I think research is important because we can learn from the experience of others. I imagine this disease affects people in many different ways, from a severe impact to a relatively minimal impact."
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CHOP Participant P56
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"I hope for my child to have a fearless transition into whatever is next for him. I hope for him to understand all that is happening to him and why, and for him to know that he is not alone. [My son] is very involved in his healthcare and always asks questions. It has been a very interesting for us to see how CKD has affected him just as much mentally as it has physically, especially when it comes to school."
CHOP Participant P33
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Welcome to the MyKidneyHealth Study page!
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This study is using pediatric Patient-Reported Outcomes (PROs) to measure health, functioning and wellbeing of children with CKD.
Meet the MyKidneyHealth study team:
Chris Forrest, MD, PhD
Principal Investigator
PRO measures are the best way to hear the voices of children about their own health.
This study is a significant step in bridging the science of PROs and clinical practice to improve children's wellbeing.
Cortney Bruno, MSW
Study Coordinator
Tyler Kelly
Research Assistant
Sofia Arruda
Research Assistant
Julia Schuchard, PhD
Study Director
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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 future, more doctors will use PRO questionnaires with pediatric patients and family members to better understand the patient's 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 200 children aged 8-21 and their parents. Your participation is helping us reach that goal!
What to expect in the MyKidneyHealth study:
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Parents and youth (ages 8-21) will complete a total of 7 questionnaires over the span of 2 years:
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Baseline survey
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3-month survey
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6-month survey
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Year 1 survey
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15-month survey
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18-month survey
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Year 2 survey
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You will receive the following messages:
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Questionnaire reminders
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Gift card information
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Health tips and information
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Gift Cards: Your ClinCard will arrive in the mail in a CHOP envelope about a week or so after you complete the Baseline questionnaire. After each questionnaire is completed, your study gift card will be reloaded, so hang on to it!
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Parent and youth 'partners': In your Baseline questionnaire, you will be asked if you'd like to partner with us and contribute to the MyKidneyHealth community by sharing health and wellness information, tips or ideas about living well with chronic kidney disease.
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The MyKidneyHealth participating site locations across the US and Canada:
Study Contact Information:
We will be contacting you throughout the study with updates about gift cards and study findings. Please don't hestitate to contact us with your questions!
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Email address: KidneyHealthStudy@email.chop.edu
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Phone number (text or call): 215-528-3689
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Check us out on social media:
We will use this webpage to post newsletters twice a year. If you woud like to see
more frequent postings, follow us on our social media pages!
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Winter 2018 Newsletter:
Spring 2019 Newsletter:
Read the full pediatric CKD Quality of Life: CKD Qol Paper
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Click on the icon to go to our Facebook and Instagram pages:
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