Children's Colorado helps develop national standards for sickle cell care

Children's Hospital Colorado (Children's Colorado) supported the National Alliance of Sickle Cell Centers (NASCC) in developing new national standards to improve how clinicians identify and manage developmental and cognitive challenges in individuals living with sickle cell disease (SCD) across the lifespan. Care for children and adults with SCD varies significantly depending on where they live and receive treatment, and this new guidance - partially informed by Children's Colorado's neurodevelopmental monitoring program - aims to reduce that variability and strengthen the quality of care nationwide.

SCD is associated with an increased risk of developmental delays and cognitive challenges, even in patients who have not experienced major neurological complications like stroke. These challenges can affect learning, decision-making and daily functioning throughout life.

Early identification of developmental and cognitive differences is critical. Without it, care teams risk the ability to connect patients with the right supports - from school accommodations to therapies and community resources - so they can succeed long-term and have the best possible quality of life."

Arianna Martin, Psy.D., co-author, pediatric neuropsychologist at Children's Colorado, associate professor of pediatrics, University of Colorado (CU) Anschutz School of Medicine and member of the NASCC neurocognitive workgroup

With a team of experts nationwide, this collaborative effort to improve patient care has resulted in the most comprehensive neurodevelopmental and neurocognitive standards and recommendations to date for SCD, building off previous guidance from the American Society of Hematology (ASH). In addition to providing clearer direction for providers nationwide, this guide presents a tiered approach to care, including how and when to conduct developmental and cognitive surveillance, screening and evaluation for patients. Key elements include:

A tiered care model - from routine surveillance to screening and full neuropsychological evaluation
Proactive monitoring, beginning in infancy and continuing across the lifespan
Regular screening at key developmental stages as opposed to trigger testing
Clearer guidance on when comprehensive evaluation is needed including a broader range of medical and developmental risk factors
A stronger emphasis on patient and family education with integrated resources to identify and address concerns promptly
More consistent, coordinated care models, including integrating services into sickle cell specialty programs when possible

"Our work is not only about establishing national standards for SCD care but also elevating the quality of that care across the board," said Alyssa Schlenz, PhD, lead author, pediatric psychologist at Children's Colorado, associate professor of pediatrics at the CU Anschutz School of Medicine and chair of the NASCC neurocognitive workgroup. "We have a responsibility to examine every aspect of this disease and ensure each is fully and thoughtfully addressed, regardless of where patients receive care."

Children's Colorado already offers a comprehensive, multidisciplinary model of SCD care through the hematology program within the Center for Cancer and Blood Disorders, and its neurodevelopmental monitoring program was established in 2019. The hospital is proud to have integrated developmental and neurocognitive monitoring into routine SCD care, helping pave the way for these new guidelines and standards through years of demonstrated success. Patients are also provided with additional supports that are often not available elsewhere, including transition planning starting in adolescence, nutrition services and access to specialized neurocognitive assessments. By bringing together specialists across disciplines, the hospital is able to support more than 200 SCD patients per year from infancy through adulthood.

This collaborative model has increased access to critical services and helped shape the newly published national standards, particularly in its focus on early identification, ongoing assessment and coordinated, lifelong care. As one of the few programs offering this level of integration, Children's Colorado serves as a regional hub for advanced and transformative therapies, while maintaining long-term relationships with patients and families and helping ensure continuity of care over time.

"What makes our program unique is the continuity and depth of care we're able to provide from infancy through adulthood," said Christopher McKinney, MD, director of the Pediatric Sickle Cell and Hemoglobinopathy Program at Children's Colorado and associate professor at the CU Anschutz School of Medicine. "We not only support patients medically but also prepare them to successfully transition out of the hospital and manage their care independently, no matter where life takes them."

Children's Colorado and the NASCC continue to emphasize the importance of reducing barriers to care and access to neuropsychological services nationwide.

Source:

Journal reference:

Schlenz, A. M., et al. (2026) Consensus Standards and Recommendations for Developmental and Cognitive Surveillance, Screening, and Evaluation in Sickle Cell Disease: Executive Summary From the National Alliance of Sickle Cell Centers Neurocognitive Workgroup. Pediatric Blood & Cancer. DOI: 10.1002/1545-5017.70569. https://onlinelibrary.wiley.com/doi/10.1002/1545-5017.70569