Development of a patient-driven adult congenital heart disease (CHD) national registry is in progress and your feedback is needed on surveys that will be used to assess patient reported outcomes on overall health and well-being. The goal of this registry is to better understand long-term outcomes for CHD patients based on patient-provided information about their health, which can be used for longitudinal and multi-center research.
Please note: Instructions for completing the surveys are included at the links below. You are asked to review the PDF survey attachments, answer the questions to yourself (or print if that is easier) then provide feedback through the accompanying questionnaires on items such as time it took to complete, ease of completion, etc. The goal is to receive feedback on the PDF surveys to determine which will be used by patients to submit information for the future ACHD national registry. Developers of the registry want to ensure the surveys are easy to understand, can be completed in a reasonable time frame and capture enough information to accurately reflect your view of your current health status.
ACHA is proud to be involved with this initiative and we would greatly appreciate your participation by completing the following surveys by September 5: