# Early Identification Of Developmental Delay Among Infants And Toddlers With Sickle Cell Disease

> **NIH NIH K23** · WASHINGTON UNIVERSITY · 2024 · $129,542

## Abstract

PROJECT SUMMARY/ABSTRACT
This K23 application proposes a research and career development plan for Catherine Hoyt, PhD, OTD to
establish herself as an independent rehabilitation scientist focused on the early identification and intervention
for developmental deficits among infants and toddlers with sickle cell disease (SCD). SCD is the most common
monogenic disorder in humans and is primarily inherited by who identify as Black or of African descent.
Complications associated with SCD (e.g., infection, pain, stroke) are common in the first years of life. In our
earlier work, we found that developmental deficits were present in > 50% of children with SCD before the age
of 3 but are none had been diagnosed or referred to intervention services. Further, children whose caregivers
participated in a home-based caregiver education program demonstrated improved test scores on
standardized measures. Thus, when developmental deficits are overlooked, children miss a critical opportunity
for intervention that could improve their developmental trajectory. The American Society of Hematology (ASH)
recommends frequent developmental screening starting in the first years of life for all children with SCD. Yet
few, if any, studies have described the incidence and severity of developmental deficit among children with
SCD compared to controls. Consistent with the American Academy of Pediatrics (AAP) guidelines, this
research will evaluate children with SCD at 9, 18, and 30 months using the best available developmental
measure, the Bayley Scales of Infant Development-4 (Bayley), to determine the incidence of developmental
deficit over the first 3 years of life compared to demographically match peers (n = 100, Aim 1). If
developmental deficits are identified, scores will be shared with the child's healthcare team so they can be
addressed. Based on theory and evidence, the proposed study will also test a multi-component Sickle Cell
Collaboration for Child Development (SCCCD) intervention. The SCCCD combines skilled therapeutic
intervention to address developmental deficits, the Parents as Teachers® curriculum and specific SCD
education. Our innovative SCCCD intervention is adapted from a pilot study and will provide 12 home visits to
caregivers and children with SCD over the course of 1 year (n = 25, Aim 2). Interviews with caregivers who
participated, as well as those who declined, will identify contextual determinants (i.e., facilitator and barriers) to
prepare for future testing and scaling up of the SCCCD intervention (Aim 3). The results from this K23 award
will provide data to understand the onset of developmental deficit in this understudied population and identify
the next steps to conduct a randomized control trial to test our SCCCD intervention in an R01 level grant
submission. These mentored research aims, combined with a career development plan for advanced training
in implementation science (Goal A), mixed methods (Goal B), prospective trial design (Goal C) an...

## Key facts

- **NIH application ID:** 10747431
- **Project number:** 5K23HL161328-02
- **Recipient organization:** WASHINGTON UNIVERSITY
- **Principal Investigator:** Catherine Rose Hoyt
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $129,542
- **Award type:** 5
- **Project period:** 2023-07-01 → 2028-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10747431

## Citation

> US National Institutes of Health, RePORTER application 10747431, Early Identification Of Developmental Delay Among Infants And Toddlers With Sickle Cell Disease (5K23HL161328-02). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10747431. Licensed CC0.

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