Thank you for your interest in furthering aniridia research by filling out the Aniridia and Neuropsychology survey. Below are the answers to Frequently Asked Questions about this survey.
- What is "Neuropsychology?"
- Who created this survey?
- Why is this survey happening?
- What does ANA hope to learn from this?
- What will ANA do with the survey results?
- How long will this survey take to fill out?
- I am just one person. Why is it helpful if I participate in the survey?
- I have aniridia and so do my kids. How should I handle this survey?
- The person with aniridia in our family doesn’t have any neuropsychology concerns. Should I still fill this out?
- What if I don’t know the answers to all the questions?
- Do I give my name when I fill this out?
- Should I worry that my child might have all of the conditions listed on the survey?
What is “Neuropsychology?”
Neuropsychology is the study of the relationship between behavior, emotion, and the mind and their relationship to the central nervous system (the brain and spinal cord). This is an umbrella term which includes things like behavioral health, learning disabilities, motor control, mental health, balance, and sensory processing.
Who created this survey?
This neuropsychology survey is a result of collaboration between ANA patient representatives and ANA scientists.
Why is this survey happening?
The aniridia patient community regularly asks questions regarding whether certain conditions are related to aniridia. Recently, many of those questions have related to neuropsychology issues, as listed above.
Aniridia patient representatives have passed along these questions to researchers, and those scientists are now interested in exploring this topic further.
What does ANA hope to learn from this?
The intent of the questionnaire is to find out this: Are these issues common enough in aniridia that science should investigate further to determine if there is a true link? The PAX6 gene is heavily expressed in the brain and central nervous system, but it is unknown at this time whether alterations in PAX6 cause these functional neuropsychology issues.
What will ANA do with the survey results?
ANA will report back to the patient community with the outcomes of the survey and with any next steps that may come as a result of the information gained.
How long will this survey take to fill out?
Approximately 7-10 minutes.
I am just one person. Why is it helpful if I participate in the survey?
In a rare disease like aniridia, EVERY person’s input is vitally important. You literally change the statistics by participating!
Surveys like these allow the patient community to participate in the research process and to make a long-term impact on how the medical community eventually defines aniridia. Participation by as many people in the patient community as possible is essential: the more people that fill out this survey, the better the data will be.
I have aniridia and so do my kids. How should I handle this survey?
Please take the survey one time for each person with aniridia.
The person with aniridia in our family doesn’t have any neuropsychology concerns. Should I still fill this out?
Yes, please! Not everyone reports these issues, and some people report only one or two. It’s important to count these people, too, in order to get an accurate assessment. If this is only filled out by those with known neuropsychology concerns and ignored by those who do not have concerns, then the data will be skewed to look like conditions are more common than is reality.
What if I don’t know the answers to all the questions?
That’s OK! You may skip a question or simply choose “Unsure”.
Do I give my name when I fill this out?
While many questionnaires have good reasons for requiring personal data (and provide excellent ways to safeguard that data), this particular survey is completely anonymous. It does not collect any personal data, so you will not provide your name.
Should I worry that my child might have all of the conditions listed on the survey?
Not everyone reports these issues, and many people report only one or two. It is not expected that anybody will report having every condition.
As of right now, it is unknown whether these conditions are even associated with aniridia. It is possible that some are. It is likely that some, or perhaps even many, are not.
It is also important to note that aniridia expresses itself differently in every individual – even in families with the exact same mutation. This survey is simply a start in the process of trying to determine if parents should be on the lookout for any of these issues in a child with aniridia, and if so, which ones.