Publication Category: Chronic Diseases

Improving Home Ventilator Alarm Use Among Children Requiring Chronic Mechanical Ventilation

Pajor NM, Kaiser ML, Brinker ME, Mullen LA, Schuler CL, Hart CK, Britto MT, Torres-Silva CA, Hysinger EB, Amin RS, Benscoter DT. Improving Home Ventilator Alarm Use Among Children Requiring Chronic Mechanical Ventilation. Pediatrics. 2022 Jun 1;149(6):e2021051968. doi: 10.1542/peds.2021-051968. PMID: 35641471; PMCID: PMC96475

Family-centered communication in pediatric sickle cell disease

Carlson MM, Bear B, Alderfer MA, Schultz CL, Monroe DP, Crosby LE, Hildenbrand AK. Family-centered communication in pediatric sickle cell disease. Pediatr Blood Cancer. 2022 Dec;69(12):e30016. doi: 10.1002/pbc.30016. Epub 2022 Sep 24. PMID: 36152000

Sustained Reduction in Time to Data Entry in the Cystic Fibrosis Foundation Registry

Nay L, Vajda J, McNamara S, Ong T. Sustained Reduction in Time to Data Entry in the Cystic Fibrosis Foundation Registry. Pediatr Qual Saf. 2022 Jan 21;7(1):e529. doi: 10.1097/pq9.0000000000000529. PMID: 35071963; PMCID: PMC8782120

Testing an Automated Approach to Identify Variation in Outcomes among Children with Type 1 Diabetes across Multiple Sites

Addison J, Razzaghi H, Bailey C, Dickinson K, Corathers SD, Hartley DM,et al. Testing an automated approach to identify variation in outcomes among children with type 1 diabetesacross multiple sites. Pediatric Quality & Safety. 2022;7(5)

Using a Multi-Institutional Pediatric Learning Health System to Identify Systemic Lupus Erythematosus and Lupus Nephritis: Development and Validation of Computable Phenotypes.

Wenderfer SE, Chang JC, Goodwin Davies A, Luna IY, Scobell R, Sears C, Magella B, Mitsnefes M, Stotter BR, Dharnidharka VR, Nowicki KD, Dixon BP, Kelton M, Flynn JT, Gluck C, Kallash M, Smoyer WE, Knight A, Sule S, Razzaghi H, Bailey LC, Furth SL, Forrest CB, Denburg MR, Atkinson MA. Using a Multi-Institutional Pediatric […]

Remote monitoring in telehealth care delivery across the U.S. cystic fibrosis care network

Ong T, Van Citters AD, Dowd C, Fullmer J, List R, Pai SA, Ren CL, Scalia P, Solomon GM, Sawicki GS. Remote monitoring in telehealth care delivery across the U.S. cystic fibrosis care network. J Cyst Fibros. 2021 Dec;20 Suppl 3:57-63. doi: 10.1016/j.jcf.2021.08.035. PMID: 34930544

Survey Research With Families in the Context of Pediatric Chronic Health Conditions: Key Considerations and Future Directions

Hildenbrand AK, Van Schoors M, Alderfer MA. Survey Research With Families in the Context of Pediatric Chronic Health Conditions: Key Considerations and Future Directions. J Fam Nurs. 2021 Aug;27(3):175-190. doi: 10.1177/10748407211014866. Epub 2021 May 24. PMID: 34024171

Engaging Caregivers and Providers of Children With Sickle Cell Anemia in Shared Decision Making for Hydroxyurea: Protocol for a Multicenter Randomized Controlled Trial

Hood AM, Strong H, Nwankwo C, Johnson Y, Peugh J, Mara CA, Shook LM, Brinkman WB, Real FJ, Klein MD, Hackworth R, Badawy SM, Thompson AA, Raphael JL, Yates AM, Smith-Whitley K, King AA, Calhoun C, Creary SE, Piccone CM, Hildenbrand AK, Reader SK, Neumayr L, Meier ER, Sobota AE, Rana S, Britto M, Saving […]

Intracranial Hypertension in Multisystem Inflammatory Syndrome in Children

Becker AE, Chiotos K, McGuire JL, Bruins BB, Alcamo AM. Intracranial Hypertension in Multisystem Inflammatory Syndrome in Children. J Pediatr. 2021 Jun;233:263-267. doi: 10.1016/j.jpeds.2021.02.062. Epub 2021 Feb 26. PMID: 33640331; PMCID: PMC7906854

Financial impacts of the COVID-19 pandemic on cystic fibrosis care: lessons for the future

Sawicki GS, Van Citters AD, Dieni O, Sabadosa KA, Willis A, Benitez D, Ong T, Dasenbrook EC. Financial impacts of the COVID-19 pandemic on cystic fibrosis care: lessons for the future. J Cyst Fibros. 2021 Dec;20 Suppl 3:16-20. doi: 10.1016/j.jcf.2021.09.008. PMID: 34930535; PMCID: PMC8711855