NOTE: IF YOU EXPERIENCE PROBLEMS DOWNLOADING FILES, try using a different browser (e.g. Chrome)

Active Projects:  

   ASD and PAH:  Medical Therapy for Pulm HTN in ASDs

   FONTANS:  FOSTER Registry on Fontan Outcomes 

   TRANSPOSITION:  Systemic Right Ventricle: Risks and Outcomes of Congestive Heart Failure

   TURNERS:  Cardiovascular Outcomes of Pregnancy in Turner Syndrome: A Multi-Center Retrospective Case-Control Study

   NEUORCOGNITIVE:  A Multi-Institutional Neurocognitive Discovery Study (MINDS) in ACHD

Projects In-progress:

   FONTAN LIVER:  Predictive Value of Hepatic Fibrosis Scores in Patients with Fontan Circulation

   FONTAN RESPIRATORY MUSCLES:  Fontan Respiratory Muscles

Propose a New Project

AARCC is continually seeking new projects to propose and conduct.  Monthly conference calls are held to discuss emerging proposals from various subgroups.  The process for submitting new proposals can be found at the link below.  It involves a brief description of the research question and intended protocol, which is then submitted via email and reviewed by the AARCC protocol committee.  Feedback is provided, as well as indications of project feasibility and interest.


Proposal Form can be found here


Completed Projects:

TACTIC:  Thromboprophylaxis for Atrial Arrhythmias in Congenital Heart Disease: a Multicenter Study.

BICUSPID AORTOPATHY: Feasibility for a randomized trial of medical therapy

HEART-ACHA.  Health Education and Access Research Trial.  A survey of new patients to ACHD centers, which seeks to identify factors affecting lapses in care and (2) improve the effectiveness of both clinical and educational efforts.

CALF: A study of the prevalence and outcome of lower extremity venous stasis and insufficiency in patients with single ventricle Fontan palliation. 

PREGNANCY STUDY.  Pregnancy and exercise capacity; a retrospective review of exercise testing results in women with ACHD before and after pregnancy.  

TOF ECHO STUDY, An exploratory cross-sectional study of Tetralogy of Fallot patients investigating the prevalence of LV systolic and diastolic dysfunction and aortic root enlargement.