ANA’s mission focuses on strengthening and expanding research into aniridia and its associated conditions. One priority is to collaborate with scientists to develop studies related to aniridia and to lead the way in promoting and developing new research. Another priority is to promote communication among all stakeholders, bridging the gaps between the scientific, clinical, and patient communities. This collaboration creates a pathway for patient concerns and priorities to be relayed to scientists and clinicians, allowing patient questions to become research questions. These activities lead to improved diagnoses and care management.
Scientists and clinicians are interested in addressing commonly asked questions by the aniridia patient community. Many of these questions have recently been related to neurological issues, like learning difficulties, motor control, auditory processing disorder, mental health, and executive functioning. These issues fall under the umbrella of “Neuropsychology.” ANA patient representatives have compiled these questions to explore how common some of these issues are in the aniridia population. As a result, the ANA Neuropsychology Survey was developed.
This survey was developed specifically to include the patient community in the research process and to allow collaboration in how the medical community eventually defines aniridia. Patient participation is essential: the more people that fill out this survey, the stronger the data will be. Not everyone will report neuropsychology issues, and some may report none or one or two. It’s critical to count as many patients as possible–with or without neuropsychology issues.
Survey results will be shared with the aniridia community along with next steps that may come as a result.
Questions? Refer to the survey’s Frequently Asked Questions or for additional questions, email ANA at ContactUs@aniridiana.org.
Thank you for your time and participation by completing the ANA Neuropsychology Survey.
