Children with Special Health Care Needs (CSHCN)

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 

Body Composition and Energy Expenditure in Youth with Spina Bifida Subaward. (PI:
Kathryn Smith; Co-Investigator: Alex Van Speybroeck).

CDC CHLA National Spina Bifida Patient Registry. (PI: Kathryn Smith, Co-Investigators:
Kristy Azpilicueta, Meliss Bent, Cecily Betz, Joan Ko, Iris Perez, Alexander Van
Speybroeck, Evalynn Vasquez, Grace Aanaya)

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, Co-Investigators: Kristy Azpilicueta, Edward Diaz, Joan Ko, Alexander Van Speybroeck, Evalynn Vasquez, Grace Anaya)

Identifying Risk Factors for Harm in Children on Invasive Home Medical Therapies (PI:
Alexis Deavenport-Saman, Co-Investigators: Thomas Keens, May Lawlor, RA: Jesus Diaz,
Adjunct Co-Investigator: Glenn Tanaka)

Health and Psychosocial Outcomes in Young Children with Cleft Palate (HAPY) (PI: Alexis Johns, Research Coordinator: Sophia Garnica)

Adaptive Cell Phone Support to Engagement Medication Adherence among Adolescents and Young Adults with Chronic Health Conditions (PI: Caitlin Sayegh, Co-Investigators: Marvin Belzer, Amy West, Shinyi Wu, RA: Aridenne Dews, Zenya Hsu, Stephanie Lopez, Rachael Wen, Elodie Zhen)

Investigating Pre-Disposition of Child Temperament and Family Dynamics for Developing Pediatric Vocal Cord Nodules (PI: Debra Don, Co-Investigators: Beth Osterbauer, Chrisian Hochstim, Alexis Johns, RA: Nancy Vega)

Risk factors for osteoporosis in children and adolescents with myelomeningocele (PI: Tisihya Wren, Co-Investigators; Robert Kay, Alexander Van Speybroeck, Data Analyst/Statistician Wendy Mack, RA: Reiko Hara, PT: Susan Rethlefsen, Study Contact Person: Adriana Liang)

Book-sharing for Toddlers with Clefts (BOOST) (PI: Alexis Johns, RA: Sophia Garnica,
Reina Patel)

Patient-Centered Medical Home for Children with Special Health Care Needs (PI: Mona
Patel Gera, Co-Investigators: Alexis Deavenport-Saman, Matthew Keefer, Data
Analyst/Statistician My Vu)

Spina Bifida Social Determinants of Health (PI: Cecily Betz)

A Randomized Standard Care-Controlled Two-Site Clinical Trial of Shared Medical
Appointment Model for Adolescents with Type 2 Diabetes (PI: Lily Chao; Co-Investigator: Fatima Aguilar, Nancy Chang, Cynthia Munoz, Jennifer Raymond, Caitlin Sayegh, Mark Reid, Jaquelin Flores Garcia, Leah Venice Eurpoa, Brenda Manzanarez, Josephine Smith, James Connad, Jessica Llovido)

Health beliefs of Caregivers Associated with the Clinical Care of Newly Diagnosed Youth
with Type 1 Diabetes Mellitus (T1DM) (PI: Leturia Namoc, Co-Investigators: Jennifer
Raymond, Cynthia Munoz, Mark Reid, Jaquelin Flores Garcia, Frances Gonzalez,
Alejandra Torres Sanchez, Megan Visser)

Investigating Care in Pediatric Uveitis Patients & Families (PI: Michal Cidon, Co-
Investigators: Amy West, Daneka Stryker, Panteha Hayati Rezvan)

Group Intervention to Enhance Adjustment among Teens with Insulin-treated Diabetes (PI: Cynthia Munoz, Co-Investigators: Olivia Hsin, Jennifer Raymond, Jesus Solano-Martinez)

RANK Ligand Assay in Patients with Metabolic Bone Disease (PI: Anna Ryabets-Lienhard, Lily Chao, Alexander Van Speybroeck, Norma Martinez Castaneda, Nancy Chang; Okwa Chukwuemelie Repository Gatekeeper: Georgia Senta)

Designing Team Clinic for Youth with Type 2 Diabetes (PI: Lily Chao; Co-Investigator:
Fatima Aguilar, Nancy Chang, Cynthia Munoz, Jennifer Raymond, Caitlin Sayegh, Data
Analyst/Statistician: Mark Reid, Quality Assurance Personnel: Jaquelin Flores Garcia, RA: Katerine Baeza-Hernandez, Research Coordinator: Josephine Smith, PT: Leah Venice
Eurpoa, Dietician: Brenda Manzanarez)

Testosterone Exposure and Congenital Adrenal Hyperplasia (PI: Mimi Kim Mimi, Co-
Investigators: Christine Mirzaian, Mitchell Geffner, Megan Herting, Joyce Javier, Linda
Randolph, Mark Urata, RA: Benjamin Hoffman-Kipp, Research Coordinator: Norma
Martinez Castaneda)

In Utero Percutaneous Endoscopic Correction of Myelomeningocele: Laparotomy versus
Percutaneous - A pilot study (PI: Ramen Chmait, Study Contact Person: Arlyn Llanes, Co-
Investigators: Peter Chiarelli, Philippe Friedlich, Eugenia Ho, Mark Krieger, HaiThuy
Nguyen, Kathryn Smith, Alex Van Speybroeck, Douglas Vanderbilt)

Publications

Atunah-Jay, S. J., Phelan, S., Anderson, A. T., Behl, S., McTate, E. A.,
Gorfinehttps://doi.org/10.1016/j.acap.2024.01.009, M. C., Sood, G., Taylor, K. K.,
Brockman, J., Salinas, M., Biggs, B. K., Wieland, M. L., & Asiedu, G. B. (2024).
Encouraging Safe and Supportive Health Care Spaces for Youth. Academic pediatrics,
24(6), 963–972.

Chmait, R. H., Chu, J. K., Van Speybroeck, A. L., Llanes, M. A. S., Korst, L. M.,
Nguyen, H. N., Kontopoulos, E. V., & Quintero, R. A. (2025). Fetoscopic repair of open
spina bifida between 26 0/7 and 27 6/7 gestational weeks and postnatal cerebrospinal
fluid diversion. The journal of maternal-fetal & neonatal medicine : the official journal of the European Association of Perinatal Medicine, the Federation of Asia and Oceania Perinatal Societies, the International Society of Perinatal Obstetricians, 38(1), 2477770. https://doi.org/10.1080/14767058.2025.2477770

Clark, S., Cohen, A., Welch, S. B., Bate, A., Anderson, A. T., Chomilo, N., Dougé, J.,
Durkee, M., Iruka, I. U., Jindal, M., Jones, S. C. T., Li, A., Arshad, A., & Heard-Garris,
N. (2024). Guidance on Conversations About Demographic groups in Pediatric Clinical
Settings. Pediatrics, 154(1), e2023063767. https://doi.org/10.1542/peds.2023-063767

Cogen, F., Rodriguez, H., March, C. A., Muñoz, C. E., McManemin, J., Pellizzari, M.,
Rodriguez, J., Wyckoff, L., Yatvin, A. L., Atkinson, T., ElSayed, N. A., Bannuru, R. R.,
Pekas, E. J., Woodward, C., & Sherman, J. (2024). Diabetes Care in the School Setting: A Statement of the American Diabetes Association. Diabetes care, 47(12), 2050–2061. https://doi.org/10.2337/dci24-0082

Costa, B, Stock, NM, Johns AL, McKinney, CM, Drake, AF, Schefer, A, & Heike, C. “I
can’t provide what my child needs”: Early feeding experiences of caregivers of children
with craniofacial microsomia. Journal of Pediatric Nursing. 77;e366-374, 2024.
PMID38729894, PMC11227386

Cushing, A. M., Nash, K. A., Foster, A. A., Zima, B. T., West, A. E., Michelson, K. A.,
& Hoffmann, J. A. (2024). Pediatric Inpatient Psychiatric Capacity in the US, 2017 to
2020. JAMA pediatrics, 178(10), 1080–1082. https://doi.org/10.1001/jamapediatrics.2024.2888

Gallager, E, P. Chow, M. Mills, H. Perry, G. Rosenbluth, A. Tam, M. Matthews, D.
Schwitzer, J. Shamshoni, , Y. R. Gutierrez**, and A. Hing, “Genetic Testing in the
Craniofacial Clinic: Development of Algorithms for Testing in Patients with Orofacial
Clefting, Craniosynostosis, and Branchial Arch Anomalies”, Cleft Palate Craniofacial
Journal.  August 18. 2024  PMID 39155612, Online ahead of print. Involved in
Algorithm preparation, presentation at national meeting and manuscript preparation.  

Gu, B, Johns, AL, Binhuwaishel, L, Dass, A, Sheller, B, Kapadia, H.P. &Yen, SLK.
Impact of protraction or orthognathic surgery for class III malocclusion on longitudinal
quality of life in patients with cleft lip and palate. Orthodontics & Craniofacial Research. 27(3);813-820, 2024. PMID38817081

Jalibois, MI, Roohani, I, Moshal, T, Lasky, S, Sader, N, Munabi, Johns AL, Durham, SR,
& Urata, MM. Sociodemographic factors associated with delayed presentation in
craniosynostosis surgery at a tertiary children’s hospital. Plastic and Reconstructive
Surgery Global Open. 12(8);e6035, 2024. PMID39220750, PMC11365692 

Kow S, Rieger B, Morse K, Keens T, Wu S. The positive impact of journaling on
adolescents with cystic fibrosis. Pediatr Pulmonol. 2024; 59: 63-71.
doi:10.1002/ppul.26708

Lehman, S. S., Yin, L., Chang, M. Y., Section on Ophthalmology , & Council On
Children with IDD; American Association for Pediatric Ophthalmology And Strabismus,
American Academy Of Ophthalmology; American Association Of Certified Orthoptists
(2024). Diagnosis and Care of Children with Cerebral/Cortical Visual Impairment:
Clinical Report. Pediatrics, 154(6), e2024068465. https://doi.org/10.1542/peds.2024-
068465

Oddiri U, Ryan MS, Collins JE , Han P, Klein M, Lyle ANJ, Kloster HM, A Narrative
Review of Key Studies in Medical Education in 2023: Applying the Current Literature to
Educational Practice and Scholarship. Acad Pediatr. Nov (2024); epub ahead of print
PMID: 39571969

Polfuss, M., Smith, K., Hopson, B., Moosreiner, A., Huang, C. C., Ravelli, M. N., Ding,
D., Huang, Z., Rocque, B. G., White-Traut, R., Van Speybroeck, A., & Sawin, K. J.
(2024). Body Composition and Energy Expenditure in Youth with Spina Bifida: Protocol
for a Multisite, Cross-Sectional Study. JMIR research protocols, 13, e52779.
https://doi.org/10.2196/52779

Punchak, M. A., Miranda, S., Montgomery, C., Agbodza, E., Chauhan, D., Houtrow, A.,
Smith, K., Foy, A. B., Leonard, J. R., Castillo, H., Castillo, J., Cady, R. G., Bowman, R.
M., Freeman, K. A., Rocque, B. G., Flanders, T. M., & Heuer, G. G. (2024). Association
between determinants of health and select neurosurgical procedures in the National Spina Bifida Patient Registry. Journal of neurosurgery. Pediatrics, 34(6), 601–609.
https://doi.org/10.3171/2024.7.PEDS24159

Stark, K. G., Wang, R. Y., Smith, K. A., Chu, J., Keens, T. G., Van Speybroeck, A.,
Chmait, R. H., Davidson Ward, S. L., & Perez, I. A. (2024). Sleep-related breathing
disorders in infants with spina bifida repaired prenatally and postnatally. Journal of
clinical sleep medicine: JCSM : Official publication of the American Academy of Sleep
Medicine, 20(10), 1579–1583. https://doi.org/10.5664/jcsm.11174

Stock NM, Crerand CE, Johns AL, McKinney CM, Koudstaal MJ, Drake A, & Heike
CL. Establishing an international interdisciplinary research network in craniofacial
microsomia: the CARE program. Cleft Palate-Craniofacial Journal. 61(9);1470-1479,
2024. PMID37248561, PMC10984877.

Gilbertson, K. E., Liu, T., Wiener, J. S., Walker, W. O., Jr, Smith, K., Castillo, J., Castillo, H., Wilson, P., Peterson, P., Clayton, G. H., & Valdez, R. (2023). Age-Specific Probability of 4 Major Health Outcomes in Children with Spina Bifida. Journal of developmental and behavioral pediatrics : JDBP, 44(9), e633–e641. https://doi.org/10.1097/DBP.0000000000001218

Mannino, J.E., Reens, H., Smith, K, Kysh, L., Nelson, S.R., Wang, Y., Raam, M., Roland, M., Van Speybroeck, A., Betz, C,L. (2024) Psychosocial needs and outcomes of adults with spina bifida: A scoping review, 1974-2023, Health care transitions, 2, 100041, https://doi.org/10.1016/j.hctj.2024.100041.

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