ACTIVE PROJECTS

Enrolling Participating Sites

  • North American IE Registry (for prospective enrollment): Dr. Jasmine Grewal (University of British Columbia)

  • ACHD Biobank: Dr. Sasha Opotowsky (Cincinnati Children’s Hospital)

  • LIRADS/Fontan HCC: Dr. Yuli Kim (Penn Medicine and CHOP)

  • CHI: Dr. Anitha John (Children's National Hospital)

  • Vascular Outcomes in LDS and vEDS: Dr. Tracey Crooks (University of Colorado Anschutz)

  • EmpowerMyCH Study: Dr. Anu Agarwal (UCSF)

For more information regarding enrollment or to contact the PI listed above, please email aarccexec@gmail.com

No Longer Enrolling Participating Sites

  • Survival Non-Cavopulmonary SV

  • Fontan Pregnancy

  • Barriers to Care

  • ASD and PH follow up study

  • HF Surgery

  • SGLT2i in ACHD

  • Outcomes of CPR in Fontan Patients

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.

Download the Protocol Proposal Template and the Protocol Committee Guidelines.

COMPLETED PROJECTS

ASD AND PAH: Medical Therapy for Pulm HTN in ASDs

FONTAN AND TRANSPLANTATION: FOSTER Registry on Fontan Outcomes 

D-TRANSPOSITION OF THE GREAT ARTERIES: Systemic Right Ventricle: Risks and Outcomes of Congestive Heart Failure

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

PREDICTORS OF HEPATOCELLULAR CARCINOMA

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.

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