Advocacy & Research
Updates on Progress
May 22, 2006 - ACHA is pleased to announce that ACHA Medical Advisory Board member Dr. Michelle Gurvitz has received Children’s Hospital and Regional Medical Center (Seattle, WA) funding to study the population characteristics in adults being seen at national ACHD clinics. This research will use billing information from all participating national ACHD clinics. It will use insurance coding to look at pooled demographic data such as age, diagnosis, and insurance status; no individual patient health records or patient identifiers will be used. It will address questions such as: What is the age and diagnostic profile of patients currently seen at ACHD clinics? Which complex ACHD patients are most likely to be seen at an ACHD clinic? Which are least likely? Are certain ages, diagnoses, and or populations over-or under-represented? This will be the first study in the United States to seek to obtain objective data on the provision of ACHD care to the complex congenital heart community. It is also the first time that ACHD clinics nationally have cooperated in joint research. More updates on this research and the results will be posted as it becomes available.