MCH Research >

Children and Youth with Special Health Care Needs Research Network (CYSHCNet)

Project Website
Principal Investigator: Christopher Stille
Project Number: UA6MC31101
Grantee: Regents of the University of Colorado, The
Project Date: 09/01/2017


  • Perinatal/Infancy (0-12 months)
  • Toddlerhood (13-35 months)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)
  • Young Adulthood (19-25 years)

Targeted/Underserved Population

  • Special Health Care Needs


Problem. Children and youth with special health care needs (CYSHCN) deserve a better health care system. The MCHB Core Elements and AMCHP Standards of Care were designed to stimulate health system improvement for CYSHCN. Rigorous multi-site research on system interventions related to the Elements and Standards is urgently needed. Goals. We propose to (1) create a national, family-engaged CYSHCN research network through integration and alignment of CYSHCN experts; development and sharing of valuable Network assets; and vesting authority in CYSHCN & families at all levels; (2) advance knowledge of optimal health systems for CYSHCN, by establishing a national research agenda to catalyze investigation; conducting multi-site health systems research on CYSHCN; disseminating findings to inspire health system improvements; and sustaining and scaling research activities with external funding; and (3) train emerging CYSHCN investigators, by enhancing research training of emerging investigators; building strong intra and cross-institutional mentoring; and sparking emerging investigator projects with Network funds. Proposed Activities and Target Population. We will create a robust, inclusive, research infrastructure, with a National Coordinating Center (NCC) and three Collaborative Research Entities (CREs), and a Secondary Data Center, at its core, with governance modeled after existing, national research networks. We will engage families as partners at all levels. With diverse stakeholders, we will establish a research agenda that prioritizes the most critical research topics in systems of care for CYSHCN and carry out such research on a national scale. In the first 5 years, we will conduct at least 3 multisite prospective studies on health systems, with the goal of obtaining external funding for each, and 10 retrospective studies on populationbased databases. Targeted populations will include YSHCN, those with medical complexity, and vulnerable racial/ethnic and socioeconomic groups. Finally, we will establish a national training program with the triad of integrated curriculum, mentorship, and small grant funding. Coordination. An Executive Committee (EC) and Steering Committee (SC) of Network leadership and representatives from the NCC and CREs will set policy and oversee Network activities, in cooperation with MCHB. CREs will provide the primary settings for initial projects. Products. (1) Well-coordinated infrastructure to support family-engaged multi-site studies; (2) A published national research agenda; (3) At least 13 manuscripts reporting findings; 4) A website, webinars, and local and national presentations to disseminate findings; 5) For emerging researchers, curriculum delivery, a mentorship network, and yearly small grant program. Evaluation. Adapt existing assessments of network effectiveness, review progress semiannually and compare to objectives set by the SC; and evaluate each objective against specified goals. Quality improvement methods will be used to identify strategies to overcome missed targets.


Listed is descending order by year published.

Agrawal R, Knabel D, Fernandez AP. Insidious-Onset Indurated Plaques on the Shins. Dermatopathology (Basel). 2021 Jun 6;8(2):185-189. doi: 10.3390/dermatopathology8020024. PMID: 34204035; PMCID: PMC8293184.

Ames SG, Alessi LJ, Chrisman M, Stanger M, Corboy D, Sinha A, Fink EL. Development and Implementation of Pediatric ICU-based Mobility Guidelines: A Quality Improvement Initiative. Pediatr Qual Saf. 2021 May 19;6(3):e414. doi: 10.1097/pq9.0000000000000414. PMID: 34046543; PMCID: PMC8143751.

deJong NA, Wofford M, Song PH, Kappelman MD. Association of Care Coordination Experience and Health Services Use with Main Provider Type for Children with Inflammatory Bowel Disease. J Pediatr. 2021 Jul;234:142-148.e1. doi: 10.1016/j.jpeds.2021.03.013. Epub 2021 Mar 30. PMID: 33798510; PMCID: PMC8238824.

Houtrow A, Elias ER, Davis BE; COUNCIL ON CHILDREN WITH DISABILITIES. Promoting Healthy Sexuality for Children and Adolescents With Disabilities. Pediatrics. 2021 Jul;148(1):e2021052043. doi: 10.1542/peds.2021-052043. Epub 2021 Jun 28. PMID: 34183359.

Houtrow A. Engaging Pediatric Physiatrists and Other Pediatric Rehabilitation Professionals to Optimize the Care of Children With Cancer. Arch Phys Med Rehabil. 2021 Dec;102(12):2489-2490. doi: 10.1016/j.apmr.2021.07.390. Epub 2021 Jul 30. PMID: 34339658.

Houtrow AJ, MacPherson C, Jackson-Coty J, Rivera M, Flynn L, Burrows PK, Adzick NS, Fletcher J, Gupta N, Howell LJ, Brock JW 3rd, Lee H, Walker WO, Thom EA. Prenatal Repair and Physical Functioning Among Children With Myelomeningocele: A Secondary Analysis of a Randomized Clinical Trial. JAMA Pediatr. 2021 Apr 1;175(4):

Joanna Thomson, Matt Hall, Katherine Nelson, Juan Carlos Flores, Brigid Garrity, Danielle D. DeCourcey, Rishi Agrawal, Denise M. Goodman, James A. Feinstein, Ryan J. Coller, Eyal Cohen, Dennis Z. Kuo, James W. Antoon, Amy J Houtrow, Lucia Bastianelli, Jay G. Berry; Timing of Co-occurring Chronic Conditions in Children With Neurologic Impairment. Pediatrics February 2021; 147 (2)

Lindly OJ, Cabral J, Mohammed R, Garber I, Mistry KB, Kuhlthau KA. "I Don't Do Much Without Researching Things Myself": A Mixed Methods Study Exploring the Role of Parent Health Literacy in Autism Services Use for Young Children. J Autism Dev Disord. 2021 Aug 25. doi: 10.1007/s10803-021-05240-0. Epub ahead of print. PMID: 34435270.

Lindly, Olivia J. et al. Toward Equitable Health Outcomes for Diverse Children With ADHD and Their Families Academic Pediatrics, Volume 21, Issue 4, 617 - 619

Mosquera RA, Avritscher EBC, Pedroza C, Bell CS, Samuels CL, Harris TS, Eapen JC, Yadav A, Poe M, Parlar-Chun RL, Berry J, Tyson JE. Hospital Consultation From Outpatient Clinicians for Medically Complex Children: A Randomized Clinical Trial. JAMA Pediatr. 2021 Jan 1;175(1):e205026. doi: 10.1001/jamapediatrics.2020.5026. Epub 2021 Jan 4. PMID: 33252671; PMCID: PMC7783544.

Mosquera RA, Avritscher EBC, Pedroza C, Lee KH, Ramanathan S, Harris TS, Eapen JC, Yadav A, Caldas-Vasquez M, Poe M, Martinez Castillo DJ, Harting MT, Ottosen MJ, Gonzalez T, Tyson JE. Telemedicine for Children With Medical Complexity: A Randomized Clinical Trial. Pediatrics. 2021 Sep;148(3):e2021050400. doi: 10.1542/peds.2021-050400. PMID: 34462343.

Murphy NA, Darro N. Parents of Children With Medical Complexity Are Essential Health Care Personnel. Pediatrics. 2021 May;147(5

Sanders LM, Perrin EM, Yin HS, Delamater AM, Flower KB, Bian A, Schildcrout JS, Rothman RL; Greenlight Study Team. A Health-Literacy Intervention for Early Childhood Obesity Prevention: A Cluster-Randomized Controlled Trial. Pediatrics. 2021 May;147(5):e2020049866. doi: 10.1542/peds.2020-049866. PMID: 33911032; PMCID: PMC8086006.

Schor EL, Bergman D. Pediatric Preventive Care: Population Health and Individualized Care. Pediatrics. 2021 Sep;148(3):e2020049877. doi: 10.1542/peds.2020-049877. PMID: 34433687

Schor EL, Johnson K. Child Health Inequities Among State Medicaid Programs. JAMA Pediatr. 2021 Aug 1;175(8):775-776. doi: 10.1001/jamapediatrics.2021.1082. PMID: 34152368.

Schor EL, Johnson K. Child Health Inequities Among State Medicaid Programs. JAMA Pediatr. 2021;175(8):775–776. doi:10.1001/jamapediatrics.2021.1082

Schor EL. Developing a Structure of Essential Services for a Child and Adolescent Mental Health System. Milbank Q. 2021 Mar;99(1):62-90.

Schor EL. Life Course Health Development in Pediatric Practice. Pediatrics. 2021 Jan;147(1

Barnert ES, Lopez N, Pettway B, Keshav N, Abrams LS, Zima B, Chung PJ. The role of parent engagement in overcoming barriers to care for youth returning home after incarceration.J Community Health. 2020 Apr;45(2):329-337.

Emanuel H, Rennie K, Macdonald K, Yadav A, Mosquera RA. Screening children with a family history of central congenital hypoventilation syndrome. Case Rep Pediatr. 2020 Mar 26;2020:2713606.

Fenning RM, Steinberg-Epstein R, Butter EM, Chan J, McKinnon-Bermingham K, Hammersmith KJ, Moffitt J, Shui AM, Parker RA, Coury DL, Wang PP, Kuhlthau KA. Access to dental visits and correlates of preventive dental care in children with Autism Spectrum Disorder. J Autism Dev Disord. 2020 Feb 28.

Lindly OJ, Chan J, Levy SE, Parker RA, Kuhlthau KA. Service use classes among school-aged children from the Autism Treatment Network registry. Pediatrics. 2020 Apr;145(Suppl 1):S140-S150.

McManus BM, Murphy NJ, Richardson Z, Khetani MA, Schenkman M, Morrato EH. Family-centred care in early intervention: examining caregiver perceptions of family-centred care and early intervention service use intensity. Child Care Health Dev. 2020 Jan;46(1):1-8.

Millstein RA, Lindly OJ, Luberto CM, Perez GK, Schwartz GN, Kuhlthau K, Park ER. An exploration of health behaviors in a mind-body resilience intervention for parents of children with developmental disabilities. J Dev Behav Pediatr. 2020 May 12.

Smith KA, Gehricke JG, Iadarola S, Wolfe A, Kuhlthau KA. Disparities in service use among children with autism: a systematic review. Pediatrics. 2020 Apr;145(Suppl 1):S35-S46.

Anderson AT, Luartz L, Heard-Garris N, Widaman K, Chung PJ. The detrimental influence of racial discrimination on child health in the United States. J Natl Med Assoc. 2020 Jun 9:S0027-9684(20)30090-0. Online ahead of print.

Auger KA, Shah SS, Richardson T, Hartley D, Hall M, Warniment A, Timmons K, Bosse D, Ferris SA, Brady PW, Schondelmeyer AC, Thomson JE. Association between statewide school closure and COVID-19 incidence and mortality in the US. JAMA. 2020 Jul 29:e2014348. Online ahead of print.

Barnert E, Sun A, Abrams LS, Chung PJ. Physical health, medical care access, and medical insurance coverage of youth returning home after incarceration: a systematic review. J Correct Health Care. 2020 Apr 1:1078345820915908.

Beltran Ale G, Benscoter D, Hossain MM, Zhang Y, Courter J, Thomson J. Impact of respiratory viral polymerase chain reaction testing on de-escalation of antibiotic therapy in children who require chronic positive pressure ventilation. Pediatr Pulmonol. 2020 Aug;55(8):2150-2155. Epub 2020 Jun 11.

Benavides-Cordoba V, Aviles S, Ascuntar C, Orozco L, Mosquera R, Rivera J. Dual use of bronchodilators versus monotherapy, and its impact on pulmonary rehabilitation in COPD patients. Pulm Pharmacol Ther. 2020 Apr;61:101898.

Coller RJ, Berry JG, Kuo DZ, Kuhlthau K, Chung PJ, Perrin JM, Hoover CG, Warner G, Shelton C, Thompson LR, Garrity B, Stille CJ. Health system research priorities for Children and Youth With Special Health Care Needs. Pediatrics. 2020 Feb 5. pii: e20190673.

Coller RJ, Berry JG, Kuo DZ, Kuhlthau K, Chung PJ, Perrin JM, Hoover CG, Warner G, Shelton C, Thompson LR, Garrity B, Stille CJ. Health system research priorities for Children and Youth With Special Health Care Needs. Pediatrics. March 2020, 145 (3) e20190673

Coury DL, Murray DS, Fedele A, Hess T, Kelly A, Kuhlthau KA. The Autism Treatment Network: bringing best practices to all children with autism. Pediatrics. 2020 Apr;145(Suppl 1):S13-S19. :

Crossman MK, Lindly OJ, Chan J, Eaves M, Kuhlthau KA, Parker RA, Coury DL, Zand DH, Nowinski LA, Smith K, Tomkinson M, Murray DS. Families’ experiences with family navigation services in the Autism Treatment Network.Pediatrics. 2020 Apr;145(Suppl 1):S60-S71.

Davis WA, Zigler CK, Crytzer TM, Izzo S, Houtrow AJ, Dicianno BE. Factors associated with ambulation in myelomeningocele: a longitudinal study from the National Spina Bifida Patient Registry. Am J Phys Med Rehabil. 2020 Jul;99(7):586-594.

Doupnik SK, Rodean J, Feinstein J, Gay JC, Simmons J, Bettenhausen JL, Markham JL, Hall M, Zima BT, Berry JG. Healthcare utilization and spending for children with mental health conditions in Medicaid. Acad Pediatr. 2020 Feb 1. pii: S1876-2859(20)30053-X.

Easterlin MC, Berdahl CT, Rabizadeh S, Spiegel B, Agoratus L, Hoover C, Dudovitz R. Child and family perspectives on adjustment to and coping with pediatric inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2020 Mar 5

Eaton BR, Goldberg S, Tarbell NJ, Lawell MP, Gallotto SL, Weyman EA, Kuhlthau KA, Ebb DH, MacDonald SM, Yock TI. Long-term health related quality of life in pediatric brain tumor survivors treated with proton radiotherapy at <4 Years of Age. Neuro Oncol. 2020 Feb 17. pii: noaa042. :

Hagerman TK, Carle AC, Houtrow AJ. Differences in reporting child health needs and status and developmental concerns between mothers and fathers: findings from the National Survey of Children’s Health. J Pediatr. 2020 Feb 6. pii: S0022-3476(19)31738-X.

Hernstadt H, Cheung A, Hurem D, Vasilunas N, Phuong LK, Quinn P, Agrawal RM, Daley AJ, Cole T, Gwee A. Changing epidemiology and predisposing factors for invasive Pneumococcal disease at two Australian tertiary hospitals. Pediatr Infect Dis J. 2020 Jan;39(1):1-6.

Lindly OJ, Chan J, Fenning RM, Farmer JG, Neumeyer AM, Wang P, Swanson M, Parker RA, Kuhlthau KA. Vision care among school-aged children with autism spectrum disorder in North America: findings from the Autism Treatment Network Registry Call-Back Study. Autism. 2020 Jul 21:1362361320942091. Online ahead of print.

Lindly OJ, Crossman MK, Shui AM, Kuo DZ, Earl KM, Kleven AR, Perrin JM, Kuhlthau KA. Healthcare access and adverse family impact among U.S. children ages 0-5 years by prematurity status. BMC Pediatr. 2020 Apr 17;20(1):168. doi: 10.1186/s12887-020-02058-0.

Macdonald KT, Mosquera RA, Yadav A, Caldas-Vasquez MC, Emanuel H, Rennie K. Neurocognitive functioning in individuals with congenital central hypoventilation syndrome. BMC Pediatr. 2020 May 6;20(1):194. doi:

Mazurek MO, Harkins C, Menezes M, Chan J, Parker RA, Kuhlthau K, Sohl K. Primary care providers’ perceived barriers and needs for support in caring for children with autism. J Pediatr. 2020 Mar 3. pii: S0022-3476(20)30027-5.

McKernan G, Izzo S, Crytzer TM, Houtrow AJ, Dicianno BE. The Relationship between motor level and wheelchair transfer ability in spina bifida: a study from the National Spina Bifida Patient Registry. Arch Phys Med Rehabil. 2020 Jul 16:S0003-9993(20)30430-5.

Oliver AC, Riva E, Mosquera R, Galeano S, Pierri S, Bello L, Caneiro A, Gai R, Miller A, Muxi P. Comparison of two different anti-infectious approaches after high-dose chemotherapy and autologous stem cell transplantation for hematologic malignancies in a 12-year period in British Hospital, Uruguay. Ann Hematol. 2020 Feb 15. doi:

Pankewicz A, Davis RK, Kim J, Antonelli R, Rosenberg H, Berhane Z, Turchi RM. Children with special needs: social determinants of health and care coordination. Clin Pediatr (Phila). 2020 Jul 16:9922820941206.Online ahead of print.

Ravid NL, Zamora K, Rehm R, Okumura M, Takayama J, Kaiser S. Implementation of a multidisciplinary discharge videoconference for children with medical complexity: a pilot study. Pilot Feasibility Stud. 2020 Feb 18;6:27.

Richie-Zavaleta AC, Villanueva A, Martinez-Donate A, Turchi RM, Ataiants J, Rhodes SM. Sex trafficking victims at their junction with the healthcare setting-a mixed-methods inquiry. J Hum Traffick. 2020;6(1):1-29.

Rocque BG, Weprin BE, Blount JP, Hopson BD, Drake JM, Hamilton MG, Williams MA, White PH, Orrico KO, Martin JE. Health care transition in pediatric neurosurgery: a consensus statement from the American Society of Pediatric Neurosurgeons. J Neurosurg Pediatr. 2020 Feb 14:1-9. doi:

Shah MD, Glenn BA, Chang LC, Chung PJ, Valderrama R, Uyeda K, Szilagyi PG. Reducing missed opportunities for human papillomavirus vaccination in school-based health centers: impact of an intervention. Acad Pediatr. 2020 Apr 12;S1876-2859(20)30166-2.

Sobotka SA, Dholakia A, Agrawal RK, Berry JG, Brenner M, Graham RJ, Goodman DM. Discharge practices for children with home mechanical ventilation across the United States: key informant perspectives. Ann Am Thorac Soc. 2020 Aug 11. Online ahead of print.

Webber S, Babal JC, Shadman KA, Coller RJ, Moreno MA. Exploring academic pediatrician perspectives of factors impacting physician well-being. Acad Pediatr. 2020 Feb 22. pii: S1876-2859(20)30075-9.

Solecki S, Adegite E, Turchi R. Clearing the air: adolescent smoking trends. Curr Opin Pediatr. 2019 Oct;31(5):670-674.

Coller RJ, Rodean J, Linares DE, Chung PJ, Pulcini C, Hall M, Alpern E, Mosquera R, Casto E, Berry JG. Variation in hospitalization rates following emergencdy department visits in children with medical complexity. The Journal of Pediatrics

Dunbar P, Hall M, Gay JC, Markham JL, Bettenhausen JL, Perrin JM, Kuhlthau KA, Crossman M, Garrity B, Berry JG. Hospital readmission of adolescents and young adults with complex chronic disease. JAMA Netw Open. 2019 Jul 3;2(7):e197613.

Feinstein JA, Hall M, Antoon JW, et al. Chronic medication use in children insured by Medicaid: a multistate retrospective cohort study. Pediatrics. 2019;143(4):e20183397. doi:10.1542/peds.2018-3397

Feinstein JA, Rodean J, Hall M, et al. Outpatient prescription opioid use in pediatric Medicaid enrollees with special health care needs. Pediatrics. 2019;143(6):e20182199. doi:10.1542/peds.2018-2199

Perrin JM, Fairbrother G, Raphael JL. Medicaid policy commentaries: an expanded academic pediatrics section. Acad Pediatr. 2019 Jul 19. pii:S1876-2859(19)30334-1.

Thomson JE, Feinstein JA, Hall M, Gay JC, Butts B, Berry JG. Identification of children with high-intensity neurological impairment. JAMA Pediatr.

Feudtner C, Schall T, Nathanson P, Berry J. Ethical Framework for Risk Stratification and Mitigation Programs for Children with Medical Complexity. Pediatrics. 2018 Mar;141 (Suppl3):S250-S258.

Berry JG, Gay JC, Joynt Maddox K, Coleman EA, Bucholz EM, O'Neill MR, Blaine K, Hall M. Age trends in 30 day hospital readmissions: US national retrospective analysis. BMJ. 2018 Fe 27;360;k497

Blaine K, Rogers J, O'Neill MR, McBride S, Faerber J, Feudtner C, Berry JG. Clinician Perceptions of the Importance of Hospital Discharge Components for Children. J Healthc Qual. 2018 Mar/Apr;40(2):79-88.

Gay JC, Zima BT, Coker TR, Doupnik SK, Hall M, Rodean J, O'Neill M, Morse R, Rehm KP, Berry JG, Bardach NS. Postacute Care after Pediatric Hospitalizations for a Primary Mental Health Condition. J Pediatr. 2018 Feb; 193:222-228.e1.

Kuo DZ, Berry JG, Hall M, Lyle RE, Stille CJ. Health-care spending and utilization for children discharged from a neonatal intensive care unit. J Perinatol. 2018 Feb 15. doi: 5. PMID 29449613

Mahant S, Berry JG, Kimberlin DW. Neonatal HSV Disease: Balancing the Low Incidence with the Need to Treat Promptly. Pediatrics. 2018 Feb;141(2).

Markham JL, Hall M, Gay JC, Bettenhausen JL, Berry JG. Length of Stay and Cost of Pediatric Readmissions. Pediatrics. 2018 Apr;141(4).

Rehm KP, Brittan MS, Stephens JR, Mummidi P, Steiner MJ, Gay JC, Ayubi SA, Gujral N, Mittal V, Dunn K, Chiang V, Hall M, Blaine K, O'Neill M, McBride S, Rogers J, Berry JG. Issues Identified by Postdischarge Contact after Pediatric Hospitalization: A Multisite Study. J Hosp Med. 2018 Feb 2;13(4):236-242.

Russell CJ, Thurm C, Hall M, Simon TD, Neely MN, Berry JG. Risk Factors for Hospitalizations due to bacterial respiratory tract infections after tracheotomy. Pediatr Pulmonol. 2018 Mar;53(3):349-357.

Samuels-Kalow M, Peltz A, Rodean J, Hall M, Alpern ER, Aronson PL, Berry JG, Shaw KN, Morse RB, Freedman SB, Cohen E, Simon HK, Shah SS, Katsogridakis Y, Neuman MI. Predicting Low-Resource-Intensity Emergency Department Visits in Children. Acad Pediatr. 2018 Apr; 18(3):297-304.

Cohen E, Berry JG, Sanders L, Schor EL, and Wise PH. Status Complexicus? The Emergence of Pediatric Complex Care. Pediatrics 2018;141;S202.

O'Brien JE, Dumas HM, Fragala-Pinkham MA, Berry JG. Admissions to Acute Care within 30 and 90 Days of Discharge Home from a Pediatric Post-acute Care Hospital. Hosp Pediatr. 2017 Nov;7(11):682-685.

Date Last Reviewed: