GOAL: To promote high quality standards of care in pediatric nephrology by encouraging doctors to work together and think about and discuss research that will benefit patients. MWPNC also works to encourage younger doctors to be involved in research and high quality patient care.
WHO CAN PARTICIPATE: Doctors from 63 medical centers across the country (not just the Midwest, despite the name!) participate in this network to ensure high quality pediatric care. See if your doctor is part of the network by clicking here.
There are many MWPNC sponsored studies seeking patient volunteers that can potentially benefit the care and treatment of NS patients including :
MWPNC also sponsors a patient registry specific to pediatric nephrology patients, called Childhood Nephrotic Syndrome Observational Study (CNOS). CNOS collects electronic health records from patients that agree to share them and will help advance the knowledge of how NS progresses in children.
COMMITMENT: Doctors commit to meeting twice a year for 2 days at each meeting to specifically discuss pediatric nephrology research.
Commitment for patients varies depending on the opportunity that they choose. Each study asks for a different commitment, which may include regular visits to a medical center, taking a medicine that is being tested for effectiveness, and additional bloodwork or other procedures.
CNOS asks for participants to share their electronic health information and spend time, either in person or over the phone, answering additional questions about your health and how you feel.
WHY IT IS IMPORTANT: As a result of the MWPNC collaboration, 32 articles have been published, with 9 of them being published this past year. MWPNC has sponsored and published studies about vitamin D, blood clots, acute kidney injury and patient reported outcomes in children with nephrotic syndrome.
The collaborative effort of the MWPNC ensures that nephrologists are aware of the most current research, and that opportunities are available for doctors to work together to find answers to questions that will help make better treatment and better patient care become a reality.