Pulmonary Hypertension in Children with Down Syndrome
Rachel K. Hopper, Steven H. Abman, Eleni G. Elia, Catherine M. Avitabile, Delphine Yung, Mary P. Mullen, Eric D. Austin, Angela Bates, Stephanie S. Handler, Jeffrey A. Feinstein, D. Dunbar Ivy, John P. Kinsella, Kenneth D. Mandl, J. Usha Raj, Lynn A. Sleeper. Pediatric Pulmonary Hypertension Network Investigators. Pulmonary Hypertension in Children with Down Syndrome: Results from the Pediatric Pulmonary Hypertension Network Registry. J Pediatr 2023;252:131-40
Hemodynamics of Pediatric Pulmonary Hypertension Patients Enrolled in the PPHNet Registry
Rosenzweig EB, Bates A, Mullen MP, Abman SH, Austin ED, Everett A, Fineman J, Feinstein J, Hopper RK, Kinsella JP, Krishnan US, Lu M, Mandl KD, Raj JU, Varghese N, Yung D, Handler SS, Sleeper LA. Pediatric Pulmonary Hypertension Network. Cardiac Catheterization and Hemodynamics in a Multicenter Cohort of Children with Pulmonary Hypertension. Ann Am Thorac Soc. 2022 Jan 20. doi.org/10.1513/AnnalsATS.202108-998OC
Building a Pediatric Pulmonary Hypertension Program
Handler, SS, Varghese, NP, Rosenzweig, EB, Yung, D, Krishnan, U, Whalen, E, Bates, A, Avitabile, CM, Jackson, EO, Hirsch, R, Fineman, J, Abman, SH, For The Pediatric Pulmonary Hypertension Network (PPHNet). Building a dedicated pediatric pulmonary hypertension program: a consensus statement from the Pediatric Pulmonary Hypertension Network. Pulm Circ. 2022; 12:e12031. doi.org/10.1002/pul2.12031
Mental Health in Pediatric Pulmonary Hypertension
Parker C, Whalen E, McSweeney J, Brown A, Raj JU, Mullen M. Perspectives on Mental Health Evaluation in Pediatric Pulmonary Hypertension: A Call to Action. Advances in Pulmonary Hypertension. 2022; 21(1): 12-15.
The Spectrum of Pulmonary Hypertension in the PPHNet Registry
Abman SH, Mullen MP, Sleeper LA, Austin ED, Rosenzweig EB, Kinsella JP, Ivy D, Hopper RK, Raj JU, Fineman J, Keller RL, Bates A, Krishnan US, Avitabile CM, Davidson A, Natter MD, Mandl KD. Pediatric Pulmonary Hypertension Network. Characterization of paediatric pulmonary hypertensive vascular disease from the PPHNet Registry. Eur Respir J. 2021 Dec 31;59(1):2003337. https://erj.ersjournals.com/content/59/1/2003337.short
Adverse Drug Events in Pediatric Pulmonary Hypertension
Geva A, Abman SH, Manzi SF, Ivy DD, Mullen MP, Griffin J, Lin C, Savova GK, Mandl KD. Adverse drug event rates in pediatric pulmonary hypertension: a comparison of real-world data sources. J Am Med Inform Assoc. 2020 Feb 1;27(2):294-300.
Maintenance and Pain Control for Subcutaneous Treprostinil Sites in Pediatric Patients
Jackson EO, Brown A, McSweeney J, Parker C. Pediatric subcutaneous treprostinil site maintenance and pain control strategies from the Pediatric Pulmonary Hypertension Network. Pulm Circ. 2021 Mar 2;11(1):2045894021994450.
Clinical Presentation of TBX4 Gene Mutations and Deletions in Children
Galambos C, Mullen MP, Shieh JT, Schwerk N, Kielt MJ, Ullmann N, Boldrini R, Stucin-Gantar I, Haass C, Bansal M, Agrawal PB, Johnson J, Peca D, Surace C, Cutrera R, Pauciulo MW, Nichols WC, Griese M, Ivy D, Abman SH, Austin ED, Danhaive O. Phenotype characterisation of TBX4 mutation and deletion carriers with neonatal and paediatric pulmonary hypertension. Eur Respir J. 2019 Aug 22;54(2)
Comparison Between Registry Data Collection and Electronic Health Record In Pediatric Pulmonary Hypertension
Geva A, Gronsbell JL, Cai T, Cai T, Murphy SN, Lyons JC, Heinz MM, Natter MD, Patibandla N, Bickel J, Mullen MP, Mandl KD; Pediatric Pulmonary Hypertension Network and National Heart, Lung, and Blood Institute Pediatric Pulmonary Vascular Disease Outcomes Bioinformatics Clinical Coordinating Center Investigators. A Computable Phenotype Improves Cohort Ascertainment in a Pediatric Pulmonary Hypertension Registry. J Pediatr. 2017 Sep;188:224-231.e5.
Implications of the Warning on the Use of Sildenafil in the Treatment of Pediatric Pulmonary Hypertension
Abman SH, Kinsella JP, Rosenzweig EB, et al. Implications of the U.S. Food and Drug Administration Warning against the Use of Sildenafil for the Treatment of Pediatric Pulmonary Hypertension. American Journal of Respiratory and Critical Care Medicine, Vol. 187, No. 6 (2013), pp. 572-575.
Actigraphy Jr. A Prospective Study to Investigate the Combination of Physical Activity and Heart Rate with the Use of Actigraphy as a Novel, Well-defined, Reliable, Sensitive, Easy-to-use, and Non-invasive Study Endpoint to Facilitate Pediatric Pulmonary Arterial Hypertension Trials and Drug Development for Children Ages 0-6 Years,
FDA Project number 75F40199C0090
Site Principal Investigator (Study PI: D. Ivy)
1/2 Kids MoD PAH Trial: Mono- versus Duo-Therapy for Pediatric Pulmonary Arterial Hypertension
NIH NHLB1 1-UG3 HL 151458-01A1
Site Principal Investigators (PIs: L Romer, E Berman Rosenzweig, S Abman)
Investigation of Actigraphy, an Exercise Measurement Device, as a Novel, Well-defined, Reliable, Feasible, Easy to Use, and Non-Invasive Study Endpoint to Facilitate Pediatric Pulmonary Arterial Hypertension Trials and Drug Development.
Principal investigator: Dunbar Ivy https://clinicaltrials.gov/ct2/show/NCT02909608
Pediatric Pulmonary Hypertension Network (PPHNet) Biorepository Program. Sponsor: Cardiovascular Medical Research Network
Principal investigators: Eric D. Austin, M.D., Allen Everett, M.D.