The CKiD Study is a team effort, requiring the collaboration and efforts of dedicated investigators, physicians, epidemiologist, statisticians, and coordinators located at many sites around the United States and Canada. Each component of the CKiD Study plays an important and unique role in the maintenance and upkeep of the study. You can learn more about the different components that keep CKiD running below.
Data Coordinating Center (DCC)
The Data Coordinating Center (or the DCC), located at the Johns Hopkins Bloomberg School of Public Health, is the statistical and epidemiological home for the CKiD Study. It is headed by principal investigators Dr. Derek Ng.
Once CKiD data are collected and entered, they are sent to the DCC to be cleaned, organized, maintained, and analyzed for different projects and publications. The DCC continually monitors the progress of the cohort, and identifies and resolves issues, both related to data collection and study conduct, as they arise at different sites across the country. The DCC also provides statistical support and advice for clinical investigators wanting to use CKiD data for a project or publication, maintains study databases, updates data collection procedures and the protocol, and is a central point for all other sites and individuals involved in the CKiD Cohort.
Clinical Coordinating Centers (CCCs)
The Clinical Coordinating Centers (CCCs) are the points of contact for all the clinical sites involved in CKiD. The CCCs are located at the Children’s Hospital of Philadelphia in Pennsylvania, headed by principal investigator Dr. Susan Furth, and Children’s Mercy Hospital in Kansas City, Missouri, headed by principal investigator Dr. Bradley Warady.
CCCs are responsible for maintaining and entering CKiD participant forms into the data entry systems, and informing the DCC of any problems they experience while entering these data. The communicate directly with the clinical sites to help them implement new protocol procedures, and help them with recruitment when the enrollment is open.
Clinical Sites
There are over 50 Clinical Sites participating in the CKiD Cohort Study. These sites are where our participants go to complete their annual CKiD visits. Clinical Sites are split up into two groups, Midwest and East Coast, with the Midwest Sites reporting and sending data to Children’s Mercy Hospital in Kansas City, and the East Coast Sites to Children’s Hospital of Philadelphia.
Central Biochemistry Laboratories (CBL)
The Central Biochemistry Laboratories (CBL) receive biological samples from the CKiD Clinical Sites. Tests, such as creatinine, clearance of iohexol, cystatin C, and many others, are run on samples at these centralized locations in order to standardize results and measurement bias in the CKiD Study. The CBL is headed by principal investigator Dr. Jesse Seegmiller at the University of Minnesota.
Central Repositories
The Central Repositories receive and maintain the biological and genetic samples collected from participants in the CKiD Study. They are maintained in these repositories for future investigator use as novel projects are proposed and new technologies for sequencing and measuring biomarkers emerge.
Central Cardiovascular Centers
The Central Cardiovascular Centers are responsible for receiving, reading and returning results on many of the cardiovascular measures collected in the CKiD Study. This includes ambulatory blood pressure monitoring (ABPM) at the University of Texas Houston Medical Center (Principal Investigator Dr. Joshua Samuels), as well as cardiovascular imaging and cardiac MRIs at Cincinnati Children’s Medical Center (Principal Investigator Dr. Michael Taylor).
Scientific Subcommittees
The CKiD Study has four Scientific Subcommittees: Kidney Disease Progression, Cardiovascular, Neurocognitive and Growth. These Subcommittees guide the initiatives undertaken, proposals submitted, and analyses performed in the CKiD Study within their specific realms. The heads of these Subcommittees are experts in their respective subfields as it relates to pediatric nephrology, and are committed to advancing and promoting the CKiD Study.
Training, Education, Recruitment and Retention (TERR) Committee
The Training, Education, Recruitment and Retention (TERR) Committee is comprised of coordinators and other CKiD Study personnel who meet on a weekly basis in order to maintain and advance CKiD’s progress and efforts. The TERR Committee regularly discusses novel recruitment and retention efforts, data quality measures, and new study procedures, among other topics.
National Institutes of Health (NIH)
The National Institutes of Health (NIH) is the primary funding supporter of the CKiD Study. NIH support comes from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) (Drs. Ziya Kirkali and Susan Mendley), the National Heart, Lung, and Blood Institute (NHLBI) (Dr. Kristin Burns) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) (Dr. Perdita Taylor-Zapata) in the form of grants. Additionally, the NIH coordinates the Observational Safety Monitoring Board, or the OSMB. The OSMB is an external group of physicians, nephrologists, statisticians, and experts in the field that provide guidance and recommendations to the CKiD Investigators in order to maintain the high quality and innovative nature of the CKiD Study.
CKiD is funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the National institute of Child Health and Human Development (NICHD), and the National Heart, Lung, and Blood Institute (NHLBI): U01DK066143, U01DK066174, U24DK082194 and U24 DK066116