ACHA has partnered with the Congenital Heart Initiative (CHI), the first patient-powered registry for adults with congenital heart disease (ACHD), since its inception. There are currently two opportunities for you to share feedback and continue to help ACHA and the CHI start to better understand some of the barriers the patients and families face when it comes to participation in research.
The first survey will take you approximately 5-10 minutes to complete, with only 10 questions. Following the results of the survey, there may be an opportunity to participate in an in-person meeting (in Washington, D.C.) in April or June. This survey is completely anonymous, and is designed to better understand the needs, challenges, and preferences of individuals with congenital heart disease (CHD) and neurodevelopmental disorders (NDDs) and their families in participating in research. If you need the questions read to you verbally, please email the CHI team at achdresearch@childrensnational.org. If you have any additional questions, please reach out to Danielle Hile, Senior Director of Medical Affairs at ACHA, at dhile@achaheart.org, or the CHI team at achdresearch@childrensnational.org.
For Patients/Caregivers/Partners/Parents/Family Members: Click here to take the survey
The second survey focuses on how adults with CHD and neurodevelopmental disabilities can also participate in research. The work also stems from the CHI. As we launched the original CHI study, we realized that a significant portion of the ACHD community was excluded due to limits with the surveys and structure of the consent process, and that some patients may need assistance completing a research study, or they may need a parent/partner/caregiver/family member to complete a survey together.
The CHI and ACHA have received your feedback, and as a result, applied for and received funding from the Patient-Centered Outcomes Research Institute (PCORI) to change that!
For interested participants and their caregivers/partners (parent, family member, etc.), if needed: Click here to be a part of the research study