Family Research Engagement Survey: Understanding ASXL Family Barriers and Motivations to Participating in Research
In rare disease communities like ours, every voice counts. Because there are so few individuals and families affected, high levels of participation are critical to making sure research studies have enough information to power accurate and meaningful insights. This survey is your chance to help researchers design studies that are meaningful, accessible, and impactful for ASXL families.
This survey closed on October 15, 2025. A summary of findings was presented at the ASXL Research Symposium and will be shared publicly soon.
Why this study is important
The goal of this survey is to better understand what motivates or discourages ASXL families from participating in research. What we learn will help the ARRE Foundation:
- Develop a communications campaign targeting ASXL families to encourage participation in future research studies
- Provide guidance to researchers on the design of their studies to maximize research engagement
The deadline to participate in this survey is Wednesday, October 15, 2025.
Who can participate in this study?
You can take this survey if:
- You are the parent or primary caregiver to someone with an ASXL-related disorder OR
- You have an ASXL-related disorder and are over the age of 18
- You can read and respond to this survey in English
One response per household please.
What is required to participate in this study?
This online survey offers several options for completion, including versions of different length:
- “Cannot participate” version: 1 minute
- Short version: 10-15 minutes
- Long version: 25-30 minutes
You must take the survey at one time. You cannot leave the survey and come back to complete it.
This survey includes several demographic questions and questions about your opinions and preferences. No additional medical information about you or your child is needed to take the survey.
How we will share the results with you
After the survey closes, a summary of the findings will be shared with the ASXL community through the ARRE Foundation’s communication channels (social media, blog, newsletter). A summary of findings will also be shared at the 2025 ASXL Research Symposium and with the ARRE Foundation’s research partners.
How this study is funded
This survey is part of a project funded by the Patient-Centered Outcome Research Institute (PCORI) to build engagement in research. It is led by the ARRE Foundation in collaboration with researchers from Kennedy Krieger Institute and UCLA.
Who can access participant data
Your participation is voluntary. You may skip any question or choose “prefer not to answer.” Your responses will be de-identified before being shared publicly in summary form. Only the ARRE Foundation team will have access to your original answers.
Contact Information
Sarah Scott
Family Education and Engagement Coordinator
Email: sarah@arrefoundation.org