Cystic fibrosis is an inherited, progressive disorder that causes persistent lung infections, limiting the ability to breathe. It affects cells that produce the body’s secreted fluids, like mucus and sweat, but makes them sticky and thick rather than thin and slippery. This causes the secretions to block tubes and ducts, particularly in the lungs.
Researchers at the Indiana University School of Medicine, led by Dr. Stephanie Davis and Dr. Ashley Deschamp, began a study entitled “Viral Pathogenesis in early Cystic Fibrosis” with the goal of improving understanding of very early respiratory disease in infants born with cystic fibrosis (CF). The study spanned multiple clinical centers, including IU, Washington University (St. Louis), and two additional sites in Australia (Perth and Melbourne).
Very early viral infections are common in young children, as many parents will attest, but last longer and are more severe in children with CF. This study focused on discovering if such viral infections could lead to an earlier progression of lung disease in these children.
The study, published in theJournal of Cystic Fibrosisin February 2019, enrolled 70 infants between the ages of 3-5 months old with CF to participate in the observational study at the four centers, and collected data through clinic visits and weekly phone calls over the course of a year. Rhinovirus, or, the “common cold,” was the most prevalent virus found, followed by parainfluenza and coronavirus.
The researchers concluded that early viral infections were associated with greater neutrophilic inflammation (neutrophils are an important component of the primary host defense line against pathogens) and bacterial pathogens. Furthermore, the team found that early viral infections seem to contribute to lower airway inflammation in infants with CF, and plan to examine longitudinal relationships between viral infections, airway microbiome, and the use of antibiotics in order to determine the relationships between these factors in children with CF.
Many clinical research groups face challenges around easily collecting and organizing data; this is even more true of research involving children. REDCap is a secure, web-based platform designed to support data collection and management for a variety of projects, including research, operations support, and quality improvement projects.Itcan be configured to collect many different types of data, including medical data, safely and in compliance with government regulations.
According to Joseph Hatch, Research Specialist at the Cystic Fibrosis Research Center, UNC Chapel Hill, “creating a REDCap database and enabling it to do a myriad of different things for the research team (e.g., sending out study reminders and/or questionnaires automatically, displaying questions that need to be answered only under very specific conditions are met, etc.) is extremely easy and can be done by a research coordinator, an investigator, or another member of the study team, without any coding experience.” Additionally, as a web-based tool, REDCap offers researchers the ability to collect and enter data on computers, tablets, or smart phones in an office, in the field, or at a patient’s bedside.
Though this project and other work in the field of pediatric pulmonology may seem targeted to a specific set of individuals and conditions, the tools developed to conduct this research or the findings of these studies have broader implications leading to better overall understanding of health, and basic biology applicable to the population at large.