REACH for the goal!

Great news: The Adult Congenital Heart Association (ACHA) announced today that the Research Empowerment in Adult Congenital Heart Disease (REACH)  initiative would receive a one million dollar federal grant! The money will be used to activate CONGENERATE – The Congenital Evaluation, Reporting, and Tracking Endeavor. CONGENRATE is an Electronic Health Record (EHR) designed for Adult Congenital Heart Defect Survivors!

REACH is a joint project between the ACHA and the Alliance for Adult Research in Congenital Cardiology. The two groups are already working together on HEART-ACHD, a two-year study of why adult CHDers “fall through the cracks” and  get away from good Cardiological care. And we aren’t in this alone: CONGENERATE will be tested at Oregon Health Sciences University, Nationwide Children’s Hospital, Cincinnati Children’s Hospital Medical Center, Children’s Hospital Boston/Brigham and Women’s Hospital, and Children’s Hospital of Wisconsin.

Whenever I travel, I take a large folder with me that contains basic health information, my diagnosis, the names of my doctors (Including my team of Cardiologists in Atlanta and that I would rather they be the first doctors contacted) EKGs, and a diagram of my heart. It comes in handy – it was with me when I went to the Emergency Room in Houston, and I have a smaller version in my back pocket when I leave the house.

If CONGENERATE had began five years ago, I wouldn’t need my folder. I’d have an ID card or an access number that could have been entered into a computer and everything you need to know about me would appear on a computer screen! CONGENERATE should be ready to roll out sometime in 2012…. and if it is a success, perhaps the next project would be a similar application for Cardiac Kids!

ACHA’s vision for every CHDer is “a life unlimited by congenital heart disease.”  Projects like CONGENERATE are small baby steps in that direction.

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2 Responses to “REACH for the goal!”

  1. raisingmcgees Says:

    This is great! I am in the process of getting my son’s medical records fro
    his first two cardiologists so we can get them to his third (each change due to a out of state move). This time I am keeping a copy for myself, like you recommend. I hope it is successful so we can get it online for Cardiac Kids.

    Do you know if patients will be responsible for providing medical records to CONGENERATE that were created before the system goes online?

    • Steve Says:

      I don’t know. I heard about this Monday (August 9, 2010) and got confirmation today, so the exact details are probably still up in the air.

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