Participate in a research study

How it works

You or your child can participate in any research studies for which you meet the eligibility criteria. Some studies have multiple parts that require direct observation over several research appointments scheduled during the conference. You will be scheduled for appointments during times that you indicate you're available. Research studies are conducted by doctors and research professionals from institutions such as University of California Los Angeles and Kennedy Krieger Institute.

This list is an example of the types of research activities that may take place at the conference:

• Completing questionnaires or surveys

• Giving a blood sample (including siblings)

• Participating in a focus group

• Being assessed by a neurologist or psychologist

If you decide to participate in one or more research studies, the details of the study and what will be required of you or your child will be explained to you by the research team during the consent process. You can ask questions at any time. Your or your child’s participation is always voluntary.

Preparing to participate

Scheduling multiple research appointments with multiple participants is a complex process. Here are some tips to help you get ready to participate in research at the ASXL Family Conference:

• Share your interest in participating as soon as possible: The process of confirming your/your child's eligibility and getting your formal permission to participate (consent) can take several weeks and may need to be coordinated between multiple research studies. Please complete our Research Interest Form as soon as possible to start the process. The ARRE Foundation will then help connect you to the right research study teams.

• Determine your arrival and departure dates: Research appointments are available all day Thursday-Sunday. Knowing your arrival and departure dates will be required for scheduling once you reach that part of the process. We encourage you to plan your travel to take advantage of research opportunities throughout the conference.

• Plan to "divide and conquer" if you can: Many families use a strategy where one caregiver will go with their child to research appointments while the other attends conference programming. Depending on your family situation, it may be helpful to bring additional caregivers to help support your participation if that’s an option available to you.