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