The Power of Research Networks - Part 2 April 2014 Newsletter In the previous newsletter, we described several research networks in which Golisano Children’s Hospital is a participant. Through these networks, patients are recruited from around the country, uniform research techniques are implemented, and a large amount of critical data are collected to help advance pediatric research. Here we highlight three additional programs that are active at our institution. Prematurity and Respiratory Outcomes Program (PROP) The Division of Lung Diseases at the National Heart, Lung, and Blood Institute of the National Institutes of Health established the Prematurity and Respiratory Outcomes Program (PROP), a nationwide collaborative to help identify biomarkers and mechanisms for chronic respiratory disease over the first year of life in former preterm infants. Since 2010, a network of dozens of collaborative scientists from six academic centers (including more than a dozen universities and hospitals) and a data coordinating center, have engaged in independent and collaborative studies. These studies include extensive, longitudinal clinical and physiological assessments of respiratory function in former preterm infants, along with the collection of numerous biospecimens for biomarker analysis. The hypothesis driving these studies is that chronic lung disease risk and severity in premature infants is multi-factorial, and that specific clinical tests and biomarkers will help to identify those infants who can benefit from specific interventions. Collaborative efforts from PROP sites have enabled the recruitment of more than 750 infants over a 2-year period, and will facilitate an assessment of the impact of local clinical practice, including studies of drug interventions. Perhaps most importantly, the PROP has enabled a diverse group of neonatologists, pulmonologists and basic scientists to collaborate to develop novel scientific hypotheses and clinical measures of lung disease in premature infants. These studies are likely to have a significant impact on both future clinical practice in the Neonatal Intensive Care Unit and the long-term health of premature infants. Neonatal Research Network (NRN) Neonatal researchers at Golisano Children’s Hospital participate in the Eunice Kennedy Shriver National Institute of Child Health and Human Development’s Neonatal Research Network (NRN). The NRN was established in 1986 to conduct multi-center clinical trials and observational studies in neonatal medicine in order to reduce infant morbidity and mortality and to promote healthy outcomes. It consists of 18 centers chosen competitively from among the finest intensive care nurseries in the US. Research done by the NRN has improved the care of newborns with brain injury, lung disease, eye disorders and a host of other problems. Comprehensive data on the hospital courses and long term outcomes of extremely premature infants provide guidance on important outcomes to neonatologists nation-wide. Examples of current study topics include further refining strategies for treating brain injury, improving blood transfusion practices, and assessing approaches to increase the use of human milk for feeding premature infants. The Rochester NRN center has also reached across the Western NY region to cooperate with the University at Buffalo to enroll patients. This is the product of a long-term collaboration with researchers in Buffalo on a variety of newborn problems. The NRN provides links to past studies and maintains a list of active studies at Neonatal Research Network (NRN). Chronic Kidney Disease in Children (CKID) The CKID Study is a multi-center, prospective cohort study of children aged 1 to 16 years with mild to moderate impaired kidney function. Two clinical coordinating centers at Children's Mercy Hospital in Kansas (B. Warady, M.D.) and at Children's Hospital of Philadelphia in Philadelphia, PA (S. Furth, M.D., Ph.D.), a central laboratory at the University of Rochester (George J. Schwartz, M.D.), and a data coordinating center at Johns Hopkins School of Public Health (A. Munoz, Ph.D.) have formed a cooperative agreement to conduct a prospective study of chronic kidney disease in children. The study is supported primarily by the Division of Kidney, Urologic, and Hematologic Diseases (DKUHD) of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in collaboration with the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute of Child Health and Human Development (NICHD) and the National Heart, Lung and Blood Institute (NHLBI). The primary goals of this study are to determine risk factors for decline in kidney function and to define how a progressive decline in kidney function impacts biomarkers of risk factors for cardiovascular disease, growth failure and its associated morbidity, and neurocognitive function and behavior. The study was funded in 2003 and began recruitment in 2004; approximately 50 sites across the USA and Canada have contributed subjects to the study. Five hundred and eighty six children with mild to moderate chronic kidney disease (of glomerular and non-glomerular origin) were recruited in the first cohort. A second cohort of 280 children was recruited in 2010-2014 to replace those leaving the study due to the development of end stage kidney disease. Subjects make annual visits for laboratory testing including measurement of GFR by iohexol plasma disappearance, renal panels, cystatin C, iron studies, lipid screening, parathyroid hormone, CRP, and vitamin D metabolites. Urine is also assessed for protein and albumin. The Central Biochemistry Laboratory provides kits to each site for each subject containing instructions, tubes, and vials for collection of blood and urine for these measurements. Thus far, the CKID study has published 53 original manuscripts in major pediatric, kidney, and epidemiology journals.