Children's Hospital Colorado helped write the first national standards for spotting and managing developmental and thinking problems in people with sickle cell disease. The hospital announced on July 28, 2026 that its clinicians co-authored the guidance for the National Alliance of Sickle Cell Centers, known as NASCC, covering patients at every age.
Sickle cell disease, or SCD, is an inherited blood disorder in which red blood cells stiffen into a crescent shape and block small vessels. Those blockages reach the brain, and the new standards treat cognitive harm as something to check for on a schedule rather than something to discover late. The document was published as a consensus executive summary in Pediatric Blood & Cancer, volume 73, issue 9, article e70569.
Table of Contents
- What the standards actually ask clinicians to do
- The Colorado program behind the document
- Why brain screening matters in a blood disease
- What patients and families can raise at the next appointment
- Where the standards stop
- Frequently Asked Questions
What the standards actually ask clinicians to do
The guidance sets a three-tier model: routine surveillance first, then screening, then a full neuropsychological evaluation. Surveillance means brief, repeated check-ins during ordinary visits. A neuropsychological evaluation is a multi-hour battery of tests measuring memory, attention, language and problem-solving. According to Sickle Cell Disease News, the document recommends developmental screening at 9, 18 and 30 months, with monitoring beginning in infancy and continuing across the lifespan.
That is the central change. Instead of testing a patient after a parent or teacher raises an alarm, the care team checks at fixed developmental stages whether or not anything looks wrong. The standards also widen the list of medical and developmental risk factors that should trigger a comprehensive evaluation. A child does not need a documented stroke to qualify for one.
The Colorado program behind the document
The lead author is Alyssa Schlenz, PhD, a pediatric psychologist at Children's Colorado and associate professor of pediatrics at the CU Anschutz School of Medicine. Schlenz chairs the NASCC neurocognitive workgroup, which is why the hospital shaped the text rather than simply endorsing it. Children's Colorado built its own neurodevelopmental monitoring program in 2019, inside the hematology program of its Center for Cancer and Blood Disorders.
The program folds developmental and neurocognitive checks into routine sickle cell visits and serves more than 200 SCD patients a year, from infancy through adulthood. That operating experience partly informed the national guidance. In the hospital's announcement, Schlenz framed the aim as consistency: "Our work is not only about establishing national standards for SCD care but also elevating the quality of that care across the board… regardless of where patients receive care.".
Why brain screening matters in a blood disease
Roughly 100,000 people in the United States live with sickle cell disease. Cognitive problems appear in this group even when no obvious stroke has occurred, which is precisely what makes scheduled screening useful. Research published in Blood, the journal of the American Society of Hematology, reports that 20% to 40% of people with SCD have silent cerebral infarcts.
A silent cerebral infarct is brain injury visible on an MRI that produced no stroke symptoms at the time. About half of people with HbSS, the most severe genotype, have had an overt or silent infarct by age 30. Those numbers explain the shift in approach. If injury commonly arrives without symptoms, waiting for symptoms means missing much of it.
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What patients and families can raise at the next appointment
The standards are addressed to clinicians, but they give families specific things to ask about. A care team following them should be able to answer each of these without a referral to another building.
Results from a neuropsychological evaluation are also the documentation schools and employers typically require for accommodations. That makes the timing of the evaluation practical, not just clinical.
- Ask whether the sickle cell clinic does developmental surveillance at every visit, or only on request.
- For young children, ask whether screening is scheduled at 9, 18 and 30 months.
- Ask what triggers a referral for full neuropsychological evaluation at that center, and whether a silent infarct on imaging is one of them.
- For teenagers and adults, ask who handles cognitive monitoring after pediatric care ends.
- Ask whether the center has an on-site neuropsychologist or refers out, and what the wait is.
Where the standards stop
These are voluntary expert-consensus standards, not regulation. NASCC assembles them through a modified Delphi process, in which member centers rate proposed statements over repeated rounds until agreement settles; its 2026 transition-to-adult-care standards came out of the same process and yielded 4 standards and 14 recommendations. No agency enforces them, and no payer is obliged to cover what they recommend. Delivery is the harder constraint.
Surveillance at a routine visit costs little, but a full neuropsychological evaluation requires a trained neuropsychologist, and many sickle cell centers do not have one. A standard that routes more patients toward evaluation will find that bottleneck quickly. The Colorado caseload is small enough that the state's own scale is worth stating plainly. A 2024 study in JMIR Public Health and Surveillance identified 435 SCD patients in Colorado in 2019, with a median age of 19, and 80.2% of them Black or African American. Birth prevalence in the state rose from 11.9 to 20.1 cases per 100,000 live births between 2010–2014 and 2015–2019.
Frequently Asked Questions
Does this guidance apply to adults, or only to children?
It covers the full lifespan. Monitoring is meant to begin in infancy and continue into adulthood, and the Children's Colorado program that informed it serves patients from infancy through adulthood.
Where can a clinician read the standards themselves?
The executive summary appears in Pediatric Blood & Cancer, volume 73, issue 9, article e70569, titled "Consensus Standards and Recommendations for Developmental and Cognitive Surveillance, Screening, and Evaluation in Sickle Cell Disease."
Is a brain MRI part of the recommended sequence?
The three tiers described here are behavioral and cognitive: surveillance, screening, then neuropsychological evaluation. Imaging findings such as a silent infarct sit among the medical risk factors that can push a patient toward full evaluation.
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