Category: Featured
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Dr. Ellen Roy Elias Honored for Lifetime Achievement in Caring for Children with Medical Complexity
The Systems and Policy Research Network (SPRNetwork formally known as CYSHCNet) is proud to announce Dr. Ellen Roy Elias as a recipient of the 2025 Pediatric Complex Care Lifetime Achievement Award. This honor celebrates Dr. Elias’s extraordinary career as a clinician, researcher, teacher, mentor, and advocate, whose work has transformed the care of children with…
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Congratulations to Nora Wells and John Gordon, MD
CYSHCNet is thrilled to announce Nora Wells and John Gordon, M.D., as recipients of the 2024 Pediatric Complex Care Lifetime Achievement Award. The Pediatric Complex Care Lifetime Achievement Award celebrates individuals who have made lifelong, exceptional, long-lasting contributions to help children with medical complexity in many areas, including clinical care delivery, advocacy, policy, administration, research, and…
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Researchers, We’ve Updated Our Primary Data Center to Help Jumpstart Your Network Studies
The Primary Data Center (PDC) helps researchers design and implement multi-site studies that benefit CYSHCN and their families. We help in three ways: We understand the challenges of conducting multi-site research and look forward to helping you and your team at any stage.
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CYSHCNet Researchers Look at Durable Medical Equipment and Supplies
Many children in the US need support for everyday activities due to health issues. Some kids need durable equipment and supplies (DMES) to help them, like glasses or machines to assist with breathing. Despite these tools being common in everyday care, not much is known about how they’re used and how they impact health. A…
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New Study: Advancing Disability Education for Pediatric Trainees
Pediatric providers need your help! CYSCHNet researchers at Lurie Children’s want to talk with children with disabilities and their families, teachers, school administrators, and hospital administrators to: Parents, family caregivers, and guardians will be interviewed in groups together, while teachers and administrators will be interviewed in other focus groups. Anyone interested can participate by following…
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Learning from Families of Children with Complex Health Issues
A team of family leaders, clinicians and researchers is interested in learning from families of children, youth or young adults with complex health issues. The team wants to understand what day-to-day life is like for families, and things that the healthcare system can do to improve family well-being. If you are a caregiver of a…
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CYSHCNet Researcher Receives Funding to Improve Healthcare at Home for Children
Agency for Healthcare Research and Quality (AHRQ) Awards $2 Million to fund “The SafeCare@Home4Kids Learning Lab: Designing Safer Healthcare at Home for Children“ Congratulations to CYSHCNet researcher Carolyn Foster, MD, MS, Attending Physician at Ann & Robert H. Lurie Children’s Hospital of Chicago, and Nicole Werner, PhD, Associate Professor at Indiana University Bloomington on their grant…
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National Research Agenda Cited at Montana AAP Annual Education Conference
The National Research Agenda was spotted by Patricia Notario, MD, the only complex care pediatrician in Montana. We are thrilled to see our work reaching areas of need. Interested in learning more about the agenda? Take this course to learn more!
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Disability and Discrimination: A Call to Action for Creating Positive Change, Together
A recent study by Dr. Stefanie Ames and colleagues sheds light on the problem of discrimination against children with complex medical needs by the medical community, emphasizing its significance for children, families, and clinicians. CYSHCNet enthusiastically applauds Dr. Ames’s efforts and appreciates the insightful commentary by Dr. Cook and colleagues, which effectively raises awareness of…
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Disability, Discrimination, and Children with Medical Complexity
New Pediatrics Study Begs the Question: How Can Knowing These Perceptions Improve Systems of Care Disability-based discrimination in health care is happening. And it results in low quality of care, limited access, and negative health consequences. A new study from CYSHCNet researcher Stefanie Ames, MD, MS, looks at the themes children with medical complexity and…