Special Health Care Needs Research


Children with Special Health Care Needs (CSHCN)

Young boy and physical therapist

Enacted in 1935 as a part of the Social Security Act, the Title V Maternal and Child Health Program is the Nation’s oldest Federal-State partnership. For over 75 years, the Federal Title V Maternal and Child Health program has provided a foundation for ensuring the health of the Nation’s mothers, women, children and youth, including children and youth with special health care needs, and their families.

Current Projects 

Sensory Adapted Dental Environments to Enhance Oral Care in Children (SADE2) Rater Reliability of Intra-Oral Camera Coding Cohort Study Oral Care in Children with Down syndrome substudy (PI: Sharon Cermak; Co-Investigator: Jose Polido)

R34 Sensory Adapted Dental Environments to Enhance Oral Health in Children with Autism Spectrum Disorders (the SADE study) (PI: Sharon Cermak; Co-Investigator: Jose Polido)

Insulin Pump Infusion Set Failure (IPISF) Management Survey of Adult Insulin Pump Patients and Caregivers of Pediatric Insulin Pump Patients (PI: Juan Espinoza)

Improving Parent Access to the Proxy Patient Portal at CHLA AltaMed Focusing on Complex Care Patients (PI: Laura Lewis)

Craniofacial Microsomia: Accelerating Research and Education (CARE) Study (Alexis John)

The role of pelvic floor physiotherapy (PPT) in bowel management of children with anorectal malformations (PI: Jaya Punati; Co-Investigator: Alex Van Speybroeck)

Investigating Pre-Disposition of Child Temperament and Family Dynamics for Developing Pediatric Vocal Cord Nodules (PI: Debra Don; Co-Investigator: Alexis Johns)

Adaptive Cell Phone Support to Promote Medication Adherence among Adolescents and Young Adults with Chronic Health Conditions (PI: Caitlin Sayegh)

Risk factors for osteoporosis in children and adolescents with myelomeningocele (PI: Tishya Wren; Co-Investigator: Alex Van Speybroeck)

A retrospective chart review of patients with craniosynostosis (PI: Mark Urata; Co-Investigator: Alexis Johns)

RANK Ligand Assay in Patients with Metabolic Bone Disease (PI: Anna Ryabets-Lienhard ;Co-Investigator: Alex Van Speybroeck)

Craniofacial Microsomia: Longitudinal Outcomes in Children pre-Kindergarten (CLOCK) (PI: Mark Urata; Co-Investigator: Alexis Johns)

Survey of Parents of Children and Adolescents with Special Health Care Needs and Disabilities on the Provision of Academic and Health-Related Accommodations in the School Setting (PI: Cecily Betz)

Body Composition and Energy Expenditure in Youth with Spina Bifida Subaward. (Kathryn Smith)

CDC CHLA National Spina Bifida Patient Registry. (PI: Kathryn Smith).

CDC National Spina Bifida Urological/Renal Protocol- CDC Urologic Management to Preserve Initial Renal Function (UMPIRE) Protocol for Young Children with Spina Bifida (PI: Kathryn Smith)

Evaluation of a Complex Intervention for Young Adults with Diabetes: The Resilient, Empowered, Active Living-Telehealth (REAL-T) Study. (Cynthia Munoz ,Co-Investigator).

Group Intervention for Teens with Insulin-treated Diabetes. (Cynthia Munoz, PI).

Examination of Rates of Hospitalization of Adults with Spina Bifida Using Los Angeles Data Resource (LADR) Aggregated Patient Information (Cecily Betz, PI).

Identifying Risk Factors for Harm in Children on Invasive Home Medical Therapies (Kathryn Smith, Co-Investigator).

Health and Psychosocial Outcomes in Young Children with Cleft Palate (HAPY) (PI: Alexis Johns)

Pediatric Device Patient Database (PD3) (PI: Juan Espinoza)

Promoting Early Literacy for Toddlers with Oral Clefts (PI: Alexis Johns)

Group Intervention to Enhance Adjustment among Teens with Insulin-treated Diabetes(PI: Cynthia Munoz)

Sleep Disorders in Patients with Spina Bifida Repaired Pre and Postnatally (Co-Investigators: Alex Van Speybroeck, Kathryn Smith)

Physiotherapy in childhood constipation management (Co-Investigator: Alex Van Speybroeck)

Survey of parent experience - Public school meal accommodations for children with food allergies (PI: Cary Kreutzer)

Emergency Department Visits and Unanticipated Hospital Admits in Patients with Spina Bifida (PI: Kathryn Smith)


Ayub, P. V., Garib, D. G., Ebrahim, H., Polido, J., Blasca, W., & Yen, S. (2022). Intercenter comparison of slow and rapid maxillary expansion in unilateral complete cleft lip and palate. Dental press journal of orthodontics, 27(3), e2220233. https://doi.org/10.1590/2177-6709.27.3.e2220233.oar

Betz, C. L., Hudson, S. M., Skura, A. L., Rajeev, N. D., Smith, K. A., & Van Speybroeck, A. (2022). Exploratory study of the provision of academic and health-related accommodations to transition-age adolescents and emerging adults with spina bifida. Journal of pediatric rehabilitation medicine, 15(4), 593–605. https://doi.org/10.3233/PRM-210116

Betz, C. L., Mannino, J. E., Disabato, J. A., & Marner, V. (2022). Health care transition planning: A potpourri of perspectives from nurses. Journal for specialists in pediatric nursing : JSPN, e12373. Advance online publication. https://doi.org/10.1111/jspn.12373

Brennan RA, Larson J, Deavenport-Saman A, Kreutzer C. (2022). The role of the registered dietitian nutritionist in California group homes for weight stabilization of individuals with intellectual and developmental disabilities. Connections. Dietetics in Health Care Communities a Dietetic Practice Group of the Academy of Nutrition and Dietetics. 46(2), 18-22.

Cheak-Zamora N, Betz C.L, & Mandy T (2022). Measuring Health Care Transition: Across Time and into the Future Journal of Pediatric Nursing, 64, 91-101, https://doi.org/10.1016/j.pedn.2022.02.018.

Espinoza, J. C., Chin, S. W., Shah, P. Tut, M. Raymond, J. K. (2022). Proposing a Practical, Simplified Framework for Implementing Integrated Diabetes Data and Technology Solutions, Frontiers in Clinical Diabetes and Healthcare, 3, https://www.frontiersin.org/article/10.3389/fcdhc.2022.867284

Espinoza, J., Shah, P., Nagendra, G., Bar-Cohen, Y., & Richmond, F. (2022). Pediatric Medical Device Development and Regulation: Current State, Barriers, and Opportunities. Pediatrics, 149(5), e2021053390. https://doi.org/10.1542/peds.2021-053390

Freeman KA, Liu T, Smith K, Castillo H, Castillo J, Joseph D, Wang Y, Tanaka S. Association between age of starting clean intermittent catheterization and current urinary continence individuals with myelomeningocele. Journal of Pediatric Urology. 2022; 18 (5), 614.e1-614.e10. https://doi.org/10.1016/j.jpurol.2022.08.022.

Mannino, J. E., Disabato, J. A., Betz, C. L., Hudson, S. M., & Marner, V. A. (2022). Health Care Transition Planning: Educational Needs of Pediatric Nurses and Pediatric Nurse Practitioners. Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners, S0891-5245(22)00084-0. Advance online publication. https://doi.org/10.1016/j.pedhc.2022.04.001

Rocqhe BG, Hopson B, Shamblin I, Liu T, Ward E, Bowman R, Foy AB, Dias M, Heuer GG, Smith KA, Blount JP. Time to shunt failure in children with myelomeningocele: An analysis of the National Spina Bifida Patient Registry. Journal of Neurosurgery: Pediatrics. 2022; 30 (5), 484-489. https://doi.org/10.3171/2022.7.PEDS22224

Schmitt, C., Castro, J., Frelinger, J. & Yin, L. (2022). Febrile Illness in 3 Adolescent Patients, The pediatric infectious disease journal, 41, 85-86, doi: 10.1097/INF.0000000000003157

Smith, KA, Hudson SM, Betz CL, Chwa JS, Cellura R, Van Speybroeck A. Risk factors for unanticipated hospitalizations in children and youth with spina bifida at an urban children's hospital: a cross-sectional study. 2022. Available online 5 September 2022, 101373. https://doi.org/10.1016/j.dhjo.2022.101373.

Stein Duker, L. I., Martinez, M., Lane, C. J., Polido, J. C., & Cermak, S. A. (2022). Association between oral care challenges and sensory over-responsivity in children with Down syndrome. International journal of paediatric dentistry, 32(4), 546–557. https://doi.org/10.1111/ipd.12933

Tran, N. N., Desai, J., Votava-Smith, J. K., Brecht, M. L., Vanderbilt, D. L., Panigrahy, A., Mackintosh, L., Brady, K. M., & Peterson, B. S. (2022). Factor Analysis of the Einstein Neonatal Neurobehavioral Assessment Scale in Infants with Congenital Heart Disease and Healthy Controls. Journal of child neurology, 37(10-11), 851–863. https://doi.org/10.1177/08830738221115982

Betz C. L. (2021). Nursing's Influence on the Evolution of the Field of Health Care Transition and Future Implications. Journal of pediatric health care : official publication of National Association of Pediatric Nurse Associates & Practitioners, 35(4), 408–413. https://doi.org/10.1016/j.pedhc.2021.01.001

Betz, C. L., Mannino, J. E., & Disabato, J. A. (2021). Survey of US pediatric nurses' role in health care transition planning: Focus on assessment of self-management abilities of youth and young adults with long-term conditions. Journal of child health care : for professionals working with children in the hospital and community, 25(3), 468–480. https://doi.org/10.1177/1367493520953649

Espinoza, J., Xu, N. Y., Nguyen, K. T., & Klonoff, D. C. (2021). The Need for Data Standards and Implementation Policies to Integrate CGM Data into the Electronic Health Record. Journal of diabetes science and technology, 19322968211058148. Advance online publication. https://doi.org/10.1177/19322968211058148

Paraszczuk, A. M., Feeg, V. D., Betz, C. L., & Mannino, J. E. (2021). Psychometric Testing of Family Centered Care (FCC) Instrument: A Mixed Methods Analysis of Pediatric Nurses and Their Workplace Perceptions of FCC. Journal of pediatric nursing, 61, 75–83. https://doi.org/10.1016/j.pedn.2021.03.015