The Vision of Children is proud to sponsor the development of the first Patient Database Registry for research and studies involving Ocular Albinism, Oculocutaneous Albinism, and other genetic vision disorders. This event fulfills two important roles: to promote accurate diagnosis involving these conditions, and to develop and test therapies to cure Ocular Albinism, Oculocutaneous Albinism, and other inherited eye diseases. The study will initially focus on collecting information on individuals with a form of albinism, such as OA and Oculocutaneous Albinism. As the study grows, other genetic vision disorders will be included.

To create a comprehensive and successful registry, we need to register as many subjects as possible to create an established pool of genetically confirmed patients for current research and to test future therapies. Scientists predict that gene therapies for some hereditary eye diseases could be ready to test on humans in the next 2 to 3 years with adequate funding and progress. This registry is necessary to progress towards this goal and to do this we need your help. We also ask that you share this important information with families and friends and encourage them to register. All information is held in the strictest of confidence.

The forms are available in Adobe Acrobat PDF. You must have Adobe Acrobat Reader to view and print the PDF files. Acrobat Reader is free and available for download online. Click here to download. 

PLEASE READ THE FOLLOWING:

***Individuals that have Adobe Standard, Professional, or Acrobat 8 can save their completed pdf form and send email the forms to: jleonard@woodfinsuites.com.  Those who have Adobe Reader can fill out the form in the provided Word Document, save, and email their forms to: jleonard@woodfinsuites.com.

Registration Forms
Patient Registry Instructions
Patient Registry Consent Form
Patient Registry Questionaire.pdf