As parents of an infant diagnosed with Norrie Disease, we felt the need to reach out to others affected by this disease. We felt the comfort first hand that came from discussing our son's symptoms and comparing notes.
One could look upon this survey as a way for families and those affected by Norrie Disease to compare more detailed notes. This survey is targeted at gathering more realistic statistics regarding Norrie Disease and its symptoms.
Perhaps with enough data entered, patterns will emerge and pique the interest of those professionals who can then conduct scientific tests of their own. It seems it is up to us to get the ball rolling.
We designed this survey with a few key concerns in mind.
- It should maintain participant privacy. When you sign up to begin the survey you will be prompted to create a user account.
Only those with this information will be able to change your data. We also hope that this will encourage you to participate in a yearly survey to update your information as things change over time.
For instance, information concerning hearing loss or developmental stages as children grow would need to be updated or added to.
- It should be easy to fill out. We should not feel daunted by sheer volume of questions. Often times, surveys can feel overwhelming and tedious. However since this is a less formal survey we wanted all participants to feel free to proceed at their own pace. You can enter data in at your leisure. Of course the more information we have the better and more accurate the statistics will be but don’t let this be a burden. Also I should note, that other than a few mandatory questions that require you to fill them in, most questions can be skipped if you’d rather not answer them.
- This survey will allow you to view the information provided by participants in graph and chart form as well as being fully accessible to the blind community. While these statistics will be able to be viewed by the public, private information will not be accessible to the general public. We know that many of you are concerned, rightfully so, about you or your children’s identifiable information being made public. We agree and therefore emails and names will not be shown.
- With time and help from volunteers we would like this survey to be available in multiple languages. We would require volunteers to help translate but we are eager to provide this survey to everyone effected by ND no matter the language.
Please feel free to contact us if you have any questions, comments or suggestions. Mark and I will do our best to get back to you as soon as possible. We are so hopeful that this survey will succeed in providing us all with some much needed collective data. Again, it's up to us.
Katherine and Mark Guzman