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As an adult with congenital heart disease (ACHD?er), or as a family member or friend, you have come to recognize that improvements in current and future care hinge upon the collection and interpretation of "follow-up" data, coupled with innovation and multi-disciplinary collaboration.
The BACH ARCHES (Adult Registry for Congenital Heart Evidence, Evaluation and Standards) is our identity-protected data collection and management group. The database has many objectives including:
Peer review monitoring of appropriateness or care and quality assurance
Outcomes assessment and risk stratification
Generation of evidence to develop medical and surgical care standards and innovative therapies
As a patient, you will likely be offered the opportunity to participate in some of the BACH ARCHES programs, but know that participation in the BACH ARCHES programs is NOT a requirement for care within the BACH group.
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