Researchers at Our Fragile X World are inviting young adults with the full mutation of Fragile X between the ages of 18 and 40 to take part in a new survey. The survey asks about what things may be important to them when deciding whether to let researchers use their electronic health records to answer questions about Fragile X syndrome. We conducted a similar survey with parents of individuals with Fragile X syndrome in the spring. Now, we are excited to hear directly from young adults!
This study will help researchers better understand the risks and benefits of using electronic health records for research purposes. The survey is confidential; we will keep your responses private.
Frequently Asked Questions
Who can take the survey?
You can take the survey if you have the full mutation of Fragile X and:
- You are 18-40 years old.
- You are your own legal guardian. You do not have a legal guardian who makes decisions for you.
- You live in the United States.
You can only take the survey one time.
How long does the survey take?
The online survey takes about 30 minutes.
What will I get for taking the survey?
If you finish the survey, you can choose to receive a $20 e-gift card to Amazon and a summary of the survey results.
What kinds of questions are on the survey?
Survey questions are about what things may be important to young adults when deciding whether to take part in a research study that would use their electronic health records. The survey is divided into three parts:
Part I: Read facts about research studies that use electronic health records and answer questions about what you read.
Part 2: Read about two pretend research studies and choose the one you like better.
Part 3: Answer questions about yourself such as your age, daily activities, and experiences with healthcare.
Will I be asked to share my electronic health records?
No, you will not be asked to share your records or to join a study that uses electronic health records. The studies you are asked about in the survey are not real studies.
What if I need help taking the survey?
You can click a button to have most of the survey screens read to you out loud. You can also ask someone to help you read and understand the survey, but you should be the one choosing the answers to the questions.
A few of the survey questions are to make sure you understand what you have read. If some responses are not correct, you may be asked to contact a member of the study team who will help you take the rest of the survey.
When will I get the amazon e-gift card and survey results?
It may take 7-10 days to receive the $20 e-gift card. The gift card will come in an email from Amazon.
We will post a summary of the survey results on our website (www.ourfragilexworld.org) when it is ready. It may take up to 6 months. We will send an email to participants to let them know the results have been posted.
This survey sounds familiar. Have I heard about this somewhere else?
We sent a similar survey to parents of individuals with Fragile X syndrome last spring. This version of the survey is for young adults with the full mutation of Fragile X, because we want to get their perspectives too.
If you are part of the Our Fragile X World research registry, you may have received an invitation to the survey in June 2018. If you are a parent, you might have received an invitation to pass on to your eligible adult child. The survey was open briefly in June, but we are re-opening the survey so that we can hear from more young adults!
I want to take the survey, or I know someone who does. What should I do?
You will need an access code to enter the survey. Contact Anne Edwards, toll free, at 866-214-2044 or firstname.lastname@example.org and provide your first and last name to receive the survey link and an access code.
If you know someone who might be eligible, please share this link with them so they can send us their contact information and get their own access code!
Who is doing this study?
This study is being done by researchers at RTI International (the home of Our Fragile X World) and the University of North Carolina at Chapel Hill.
Who is funding this study?
This study is funded by part of the National Institutes of Health (NIH).