About the Pediatric CRG
Recognition of the unique attributes of childhood that merit a special research focus is relatively new. The types, manifestations, and frequency of various diseases as well as the adverse event profile for medical treatments often differs between adults and children. Sadly, conditions such as hypertension and metabolic syndrome once considered adult problems have infiltrated childhood. Maturation of children’s physiology influences the qualitative and quantitative effects of medical products, which calls into question the use of hand-me-down results from medical product studies done among adults. Particularly for infants and young children, we rely on parents and caregivers to implement treatments and to provide their observations on treatment effects.
To address these and other pediatric challenges for PCORnet, we have developed a Pediatric Collaborative Research Group that is dedicated to supporting the development of multi-network research projects for children and adolescents, while advancing the sustainability of PCORnet as a research consortium.
Scientific Co-leadsChris Forrest (PI, PEDSnet) Betsy Shenkman (PI, OneFlorida)
Patient/Caregiver LeadAmy Kratchman (PEDSnet)
Project ManagersAnna de la Motte (PEDSnet) Shannon Alford (OneFlorida)
Pediatric CRG Membership
Membership benefits include:
- Facilitated access to PCORnet resources for your research ideas and projects
- Assistance with developing collaborative relationships between PCORnet networks, scientists, and research participants (matchmaking function)
- Ability to develop multi-institutional teams, and Research Interest Groups focused on a specific clinical population
- Receive targeted communications specific to your areas of interest including a periodic CRG newsletter
- Learn about research opportunities specific to your areas of research interest and made available to the CRG by the People-Centered Research Foundation
Download the current Pediatric CRG Membership List
While the U.S. spends a significant amount of time and money on clinical research, many of the questions that patients, their families, and clinicians ask about healthcare — specifically questions about which options are best for individual circumstances and goals — cannot be easily answered. The current clinical research system faces several problems: it’s too expensive, it takes a long time to get results, and it doesn’t answer practical questions that patients want answers to.
In 2014, the Patient Centered Outcomes Research Institute (PCORI) invested more than $250 million in the development of PCORnet: The National Patient-Centered Clinical Research Network, designed to empower people to make informed healthcare decisions by enabling clinical research that is faster, easier, less costly and, most importantly — more relevant to their needs.
PCORnet is a large, highly representative, national “network of networks” that collects data routinely gathered in a variety of healthcare settings, including hospitals, doctors’ offices, and community clinics. By engaging a variety of stakeholders – patients, families, providers, and researchers – PCORnet empowers individuals and organizations to use this data to answer practical questions that help patients, clinicians, and other stakeholders make informed healthcare decisions. (Read more.)