As parents, the safety and well-being of our children is a key concern. We’re constantly seeking information that will help us make the best decisions for their health and development. But, for many of us, there is a frustrating obstacle: a distinct lack of comprehensive data on children’s health–including mental, physical, behavioral, and developmental health. This gap in usable information isn’t just a small inconvenience, it’s indicative of a greater barrier to advancing pediatric healthcare and addressing the individual needs of our kiddos.
In this article, we’re going to briefly explore the reasons behind this lack of data, explore the broader implications, and discover how technologies like Littlebird are working to pioneer the next generation of information and data in pediatric healthcare.
The shortage of clinical trials in pediatric health is a critical issue in the US. Especially in areas with high clinical needs, where there is already a strain. While randomized controlled trials for adults have almost doubled over the past two decades, the number of pediatric clinical trials has remained nearly the same¹.
Despite children contributing to almost 60% of the total disease burden, only 12% of trials registered on ClinicalTrials.gov are focused on the pediatric population². This stark disparity is exacerbated by a lack of clinical trials in infants, particularly newborns, where they are greatly needed. Acknowledging these age disparities is key to ensuring equitable access to healthcare for all children worldwide³.
Several key factors are contributing to the scarcity of pediatric health and care data:
Performing clinical research on children creates social and ethical dilemmas that aren’t as present in adult clinical studies. For researchers, significant safeguards are in place to protect young participants, which makes these trials more complex and challenging to perform. This is essential for ethical and safe clinical trials, but certainly adds complexity.
Pediatric studies often require notably more time and resources than studies for adults. Child specific formulations, dosages, and monitoring protocols are required, which increase the costs and complexity of the research overall.
Many treatable diseases are more commonly found in adults, which leads to an emphasis on this demographic. In return, it diverts attention and resources away from conditions among the pediatric population, which may also be less common or commercially appealing to fund.
At Littlebird, we recognize and acknowledge the critical need for more robust pediatric health and care data. Health hardware technologies like Littlebird are stepping in to fill the gap. We are standing in the front to help families establish data baselines for their children and make informed care decisions. By activating tech and community engagement, we are on a mission to democratize children’s health information and ensure that parents have all of the knowledge they need to navigate their children’s individual needs with confidence.
We realize that the scarcity of data on children’s health is a nuanced, multifaceted issue that requires a collaborative effort between researchers, policymakers, and the medical community. As parents, staying informed about these challenges and supporting children’s health data initiatives can empower us to advocate for better health outcomes for all of our children.
Sources:
¹ Cohen E, Uleryk E, Jasuja M, Parkin PC. An absence of pediatric randomized controlled trials in general medical journals, 1985–2004. J Clin Epidemiol. 2007;60:118–123. https://pubmed.ncbi.nlm.nih.gov/17208117
² Bourgeois FT, Murthy S, Pinto C, Olson KL, Ioannidis JP, Mandl KD. Pediatric versus adult drug trials for conditions with high pediatric disease burden. Pediatrics. 2012;130:285–292. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3408692/
³ Pathma D Joseph, Jonathan C Craig, Patrina HY Caldwell. Clinical trials in children. Br J Clin Pharmacol. 2015 Mar; 79(3): 357–369. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4345947/
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