At time of delivery, umbilical cord will be harvested with the umbilical vein dissected free and preserved until first clinically indicated Stage I palliative procedure.Enrollment goal: 16 Primary investigator: Sitaram Emani, MD Contact: Bre Piekarski, RN, BSN: [email protected] 617-919-4457 Title: Assessing the Use of a Preventive Cardiology Lifestyle Screening (PCLS) Tool in a Pediatric Subspecialty Lipid Clinic Description: In order to facilitate care, the Preventive Cardiology providers have developed a Pediatric Preventive Cardiology Lifestyle (PCLS) questionnaire that we believe will enable our clinical practice to identify lipid-specific high-risk lifestyle behaviors in a way that: 1) identifies lifestyle behaviors as well as longer and more intensive research questionnaires; 2) either does not delay, or even speeds up data collection on relevant lifestyle behaviors; 3) results in high patient and provider satisfaction; and 4) results in no worsening in lipid outcomes compared to usual care. [email protected] 617-355-4329 Title: Oral Treprostinil as Transition or Add-On Therapy for Pediatric Patients with PAH Description: This multi-center, open-label, multiple dose study investigates the safety, tolerability and pharmacokinetics of oral treprostinil in pediatric patients (ages 7-17) with PAH.Harnessing the existing infrastructure of the ongoing Subspecialty Lipid SCAMP, which collects family history, laboratory data, anthropometrics and other characteristics from the patient/ family, we will assess our present practice in Preventive Cardiology clinics with regard to time spent and satisfaction of the patient/ family and the provider. The study looks at three different cohorts: Cohorts 1 and 2 include patients transitioning from current prostacyclin use to oral treprostinil.
At Boston Children’s Hospital, up to 40 children between 2 to Title: Pharmacodynamics, Pharmacokinetics, Safety and Efficacy of Rivaroxaban for Thromboprophylaxis in Pediatric Subjects 2 to 8 Years of Age after the Fontan Description: This prospective, open label active controlled multi-center study is tasked with the goal to evaluate the safety and optimal dosing of rivaroxaban (an oral anticoagulation agent) compared to acetylsalicylic acid for thrombus prevention in children aged 2 to 8 years with single ventricle physiology who have completed the Fontan procedure. Lin Z, Guo H, Cao Y, Zohrabian S, Zhou P, Ma Q, Van Dusen N, Guo Y, Zhang J, Stevens SM, Liang F, Quan Q, van Gorp PR, Li A, Dos Remedios C, He A, Bezzerides VJ, Pu WT. Acetylation of VGLL4 Regulates Hippo-YAP Signaling and Postnatal Cardiac Growth. Heart block following stage 1 palliation of hypoplastic left heart syndrome. Title: Placental Biopsies in Hypoplastic Left Heart Syndrome Patients Description: Placental biopsies will be collected from women with fetuses diagnosed with hypoplastic left heart syndrome (HLHS) at the time of delivery.The goal is to compare the growth of stem cells from a placenta of a child with HLHS to cells from neonates with no known medical diagnosis.Participants will receive therapy for up to 12 months. Enrollment goal: 25 Primary investigator: Christina Vander Pluym, MD Contact: Priscilla Cevallos: Priscila. Jenkins KJ, Koch Kupiec J, Owens PL, Romano PS, Geppert JJ, Gauvreau K.
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[email protected] 617-355-8228 Title: GORE CARDIOFORM ASD Occluder Clinical Study: A Study to Evaluate Safety and Efficacy in the Treatment of Transcatheter Closure of Ostium Secundum Atrial Septal Defects (ASDs) – The Gore ASSURED Clinical Study Description: The goal of this study is to evaluate the safety and efficacy of a new ASD occluder device as part of an FDA-approved IDE multicenter trial. Seekell RP, Lock AT, Peng Y, Cole AR, Perry DA, Kheir JN, Polizzotti BD.