Innovation in Multicenter ACHD Data

The ROPAC Study and How We Did It
Presented by Jolien Roos-Hesselin

roos-hesselink-jolienJolien Roos-Hesselink is Professor of Cardiology at the Erasmus MC in Rotterdam, The Netherlands.  She is director of the Department of Adult Congenital Heart Disease. Her clinical work and research involves adult congenital heart disease, pregnancy in cardiac patients and aortic disease.

She has authored and co-authored over 200 scientific publications and mentored 10 PhD students. She is incoming-chair of the ESC working group on Adult Congenital Heart Disease. She participated in the Taskforce for writing ESC-guidelines on Pregnancy and cardiac disease, and on Endocarditis.

At the moment she is principal investigator of a multicentre study investigating bicuspid aortic valve disease and Turner syndrome and she is founder and co-chairperson of the Registry on Pregnancy and Cardiac Disease (ROPAC) on behalf of the European Society of Cardiology.


The NOTE Registry and How We Are Doing It
Presented by Barbara Mulder, MD
Academic Medical Center in Amsterdam, the Netherlands

mulder-barbaraBarbara JM Mulder is Professor of Cardiology in the Academic Medical Center in Amsterdam, the Netherlands. In 2001 she initiated the national registry and DNA bank for congenital heart disease, named CONCOR ( CONgenital CORvitia), in which presently over 16.000 patients have been included. She chaired the European Heart Survey on congenital heart disease with 79 participating centers from 24 countries.. From 2010 until 2012 she was president of the International Society of Adult Congenital Cardiology, ISACHD. At present, she is the president of the                                                  Netherlands Society of Cardiology.


Obstacles and Successes in Utilizing Administrative US Healthcare Data
Presented by Tara Karamlou, MD, MSc
UCSF Benioff Children’s Hospital

karamlou-taraTara Karamlou, MD is a pediatric cardiac surgeon and Assistant Professor of Surgery at UCSF. She is board-certified by the American Board of Thoracic Surgery in Thoracic and Cardiac Surgery and in Congenital Cardiac Surgery.
Dr. Karamlou received her MD from Baylor College of Medicine, completed surgical residencies at Oregon Health Science University and the University of Michigan. She is a past recipient of the Nina Braunwald Fellowship from the Thoracic Surgery Foundation for Research and Education, the John Kirklin Fellowship with the Congenital Heart Surgeons’ Society at the Hospital for Sick Children in Toronto, the Hawley Seiler Resident Award in 2004 and 2007, and the J. Maxwell Chamberlain Award from the Society of Thoracic Surgeons. Dr. Karamlou completed her pediatric cardiac surgery fellowship at Seattle Children’s Hospital and was on faculty there prior to her recruitment to UCSF in 2012.
Dr. Karamlou’s research and clinical interests are directed at quality improvement and health policy directives in pediatric and adult congenital cardiac surgery. She has focused on the volume-outcomes relationships in congenital cardiac surgery and the use of large datasets to answer clinical questions. She has received multiple grants for her work in development of miniaturized circuitry for pediatric extracorporeal circuits and evaluation of long-term functional health status in single ventricle lesions. At UCSF, Dr. Karamlou has spearheaded a home monitoring program to improve outcomes for patients with hypoplastic left heart syndrome, now in its second year. She is the chair of a California statewide collaborative that aims to improve value-based care and resolves socioeconomic healthcare disparities for patients with congenital heart dsease. Dr. Karamlou is a member of the STS National Database’s Access and Publications Committee and its Linked Registry Proposals and Longitudinal Taskforce. She is the associate statistical editor for the Journal of Thoracic and Cardiovascular Surgery and is a member of the Annals of Thoracic Surgery editorial board. She has published over 75 peer-reviewed publications in the field of pediatric cardiac surgery and has authored 10 book chapters.


Claims Data and Subspecialty Populations: Relevant for Adult Congenital Heart Disease Care?
Presented by Abigail Khan, MD

khan-abigailDr. Abigail May Khan received her medical degree from Harvard Medical School and went on to complete a residency in internal medicine at Massachusetts General Hospital. She completed her adult cardiology fellowship at the University of Pennsylvania and then an adult congenital heart disease fellowship at UPenn/The Children’s Hospital of Philadelphia.  She is currently an Assistant Professor of Medicine at the Knight Cardiovascular Institute at Oregon Health & Science University in Portland, Oregon. Dr. Khan has published in multiple areas of cardiology including biomarkers, risk assessment, and advanced imaging. Her current clinical and research interests include cardiac disease in pregnancy and the use of claims data to understand outcomes in the ACHD population.

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