Discussion Forum
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Project FAQ

Have questions about REACH? Learn more about the project below.

The Research Empowerment in Adult Congenital Heart (REACH) Disease Project’s objective is to create the IT, data-sharing, education, and oversight tools necessary for a patient-driven, national adult congenital heart disease research network using a CHD-specific data tool called CONGENERATE. A national REACH resource center will be established at ACHA to provide a toolkit to assist in making CONGENERATE available as a free download to all interested ACHD programs.

Specific Project Aims:

  1. To create a patient-centered research model for adult patients with congenital heart disease by:
    1. Building communication and education structures to promote individual participation in research.
    2. Building national and regional structure and process to foster patient oversight and input.
    3. Creating a web-based platform to provide patients an ACHD-specific personal health record.
  2. To employ novel electronic health record technology to create a national infrastructure for multicenter research in congenital heart disease through:
    1. Piloting a uniform adult congenital heart disease-specific electronic health record (EHR) and data management tool at 5 national ACHD programs.
    2. Compiling de-identified data for shared use by the providers and patient communities for research purposes.
  3. To empower bidirectional communication between adult congenital heart patients and investigators of research needs and outcomes by jointly:
    1. Providing patient-driven proposals for research studies.
    2. Circulating research results through patient and provider mechanisms.
    3. Creating the communication, implementation, and oversight tools necessary to allow widespread adoption of ACHD-specific EHR and participation in a national ACHD registry.
    4. Maximizing participation by providing free EHR access via a jointly-run web portal.

In 2011, and as part of the REACH project, community meetings were held at all 5 sites. Click here to learn more about these interactive community meetings.