Research Questions in ASXL-Related Disorders Survey
Deadline: Monday, March 24
Over 200 ASXL families completed an ARRE Foundation survey in 2022 to identify their top concerns and at the 2024 ASXL Family Conference, we conducted 15 focus groups with ASXL parents to dig deeper into these issues. Based on what we learned in the focus groups, we’ve developed a list of questions for researchers to help answer and we need your help to prioritize them. You also have an opportunity to suggest your own research questions through this research survey.
Why this study is important
There are many unanswered questions in ASXL-related disorders. This study aims to collect feedback from the ASXL community on which research questions are the most important to answer. The results of this study may inform the future direction of ASXL research.
Parent/caregiver participants can also share information in this research survey about their child’s symptoms and abilities to help researchers better understand the full clinical spectrum of ASXL-related disorders.
Who can participate in this study
You can take this research survey if:
You have any connection to the ASXL community, including as a parent or other family member, caregiver, educator, healthcare provider, researcher, or have a role related to drug development or regulation
You can read and respond to this survey in English
You are 18 years or older
Multiple members of the same household may take this survey
How to participate in this study
This online research survey will take 15-20 minutes to complete. You can leave the survey and come back to complete it. You will first be asked to suggest some of your own research questions.
How we will share the results of the study with you
After the study concludes, a summary of the findings will be shared by email with participants. The study team will also share the results of the study with ASXL families through a virtual presentation hosted by the ARRE Foundation. The study team also anticipates preparing the results of this study for publication in a medical journal.
Next steps if you are interested in participating
Take the digital survey online by Monday, March 24, 2025 using the survey link.
If you have questions about this research survey, please contact Rachel Northrup, study coordinator, at ludwigresearch@kennedykrieger.org.
This is a research study (IRB00473005) conducted by Dr. Natasha Ludwig focused on ASXL-related disorders.