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The Emerging Investigator Research Guided Research Program is now accepting applications.

CYSHCNet is funding up to three projects focused on health systems research for children and youth with special health care needs (CYSHCN). Projects will be funded up to $15,000 for one-year. A youth or family partner is required. We can help with identifying a partner. 

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Patient Perspective

Sandra Clancy shares why she chooses to participate in pediatric health systems research.  

"Parents have so much to contribute." 

Fifteen years ago, Sandra Clancy’s five-year old son got very sick. In the nine months it took his large team of providers to diagnose him, the family had many encounters with the health care system: outpatient appointments, inpatient stays, and visits to the emergency department. 

When he died a year later, Sandra reached out to the chief of pediatrics to share her experience.

“It was unclear to me who the leader of the team was, and my husband and I had to navigate the system on our own,” she said. 

Despite her concerns about the system, Sandra made sure to express her gratitude for the exquisite care her son received. 

“It sounds contradictory, but it’s not in the sense that my son got the best care possible that the system itself would allow. Everybody was doing their best within a very dysfunctional system.”

In the News

• Hundreds of Suicidal Teens Sleep in Emergency Rooms. Every Night. As mental health disorders surge among adolescents, long wait times for inpatient services force young people to stay in emergency departments for upwards of 10 days. Providers, parents, and advocates are at a loss of how to provide acute mental health services to adolescents, agreeing that emergency departments are not an appropriate space. 
• The Families of Trans Kids in Texas Consider Their Options Amid Crackdown on Care. This article offers a case-study framing the impact that recent anti-trans legislation in Texas has had on the lives of trans children in the context of how it has impacted a specific family. This legislation has disrupted access to gender affirming treatment, even for people who are already receiving it. Some families are considering seeking treatment out of state, but options are limited for many. 
• A US Pediatricians' Group is Trying to Eliminate Race-Based Medical Guidance. The AAP has announced an initiative to eliminate “race-based” medical guidance from its treatment recommendations. Vestiges of these out of date and discriminatory guidelines remain embedded in the AAP’s catalog of materials and contribute to large-scale systemic health care disparities in children. 
• Babies Die as Congenital Syphilis Continues a Decade-Long Surge Across the US. Congenital syphilis in infants is an ongoing and increasing problem across the United States over the past ten years, as both infections, complications, and deaths continue to rise. This relatively recent influx of cases comes on the heels of the near eradication of the congenital manifestation of the disease. Many of these cases disproportionately impact already underserved populations, often due to a lack of education and access to resources before, during, and after pregnancy.
• Bill Aims to Prevent Runaways, Improve Mental Health Results for Colorado Foster Youth at Residential Centers. A recent legislative proposal in the Colorado State Legislature would require the development of new standards for residential foster care facilities. An investigation of foster care residential centers in Colorado found that runaways are an extremely common occurrence, and that this act and the system that leads to it are a threat to the safety and well-being of children in the foster care system. This legislation would require that the state work with a university in order to develop a new system for quality control, as well as offer an online dashboard where both parents and the public could view data on the quality of care in these environments.

CYSHCNet is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under UA6MC31101 Children and Youth with Special Health Care Needs Research Network. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS, and the U.S. Government. Website

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