This survey has been designed by patients and families affected by Inherited Retinal Degenerations to learn about the experience of how other people all over the world living with Inherited Retinal Degenerations and their families access genetic testing and counselling services.

The results of this survey will help to describe the best standard of care for people looking to obtain genetic testing and counselling for their Inherited Retinal Degeneration. The results of this survey will also identify where support is needed to deliver a good standard of genetic testing and counselling. Therefore, the results will help individuals and organisations to advocate effectively for access to equitable, affordable, accessible and timely genetic testing for Inherited Retinal Degenerations.

Your participation in this survey will help clinicians, genetic specialists, researchers and eye care professionals to understand the information and support patients will need to navigate to the diagnosis, prognosis and care for their conditions and to facilitate further policy actions and research development in the Inherited Retinal Degeneration domain.

Depending on your responses, this survey has between twenty-six and thirty-eight questions and will take approximately seventeen minutes to complete.

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* 1. This survey will collect personal information about you including demographic information ( for example your age and gender). It will also collect personal information about your experience of accessing genetic testing and counselling services for an inherited retinal degeneration (IRD). 

Your personal information collected as part of this survey will be kept strictly confidential. Your identity will not be revealed and your confidentiality will be protected in any reviews and reports of this study which may be published.

Your participation in this survey is voluntary; and you can withdraw at any time if you change your mind. If you decide to withdraw your consent by exiting the survey mid-way through, your responses will not be recorded.

You also have the right to:      
-ask that we delete the personal information that you provide, or restrict the way in which we use your personal information;
-withdraw consent to our processing of your personal information; and
-obtain and/or move your personal information
You can do so by emailing Orla.Galvin@retina-international.org or Petia.Stratieva@retina-international.org

If you are over eighteen years old and would like to proceed with this survey please provide consent:

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* 2. What sex were you born?

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* 3. How old are you?

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* 5. What year did you have genetic testing?

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* 6. Which of the following reasons did you have for seeking a genetic test? Please select all that apply.

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* 7. Which of the following is the main reason you wanted a genetic test?        Please select one main reason.

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* 8. Was your eye doctor supportive in obtaining a genetic test? Please select the most appropriate answer.

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* 9. How many physicians (include family doctors, optometrists, ophthalmologists, and retinal specialists) did you attend between your first concern or symptom and your genetic diagnosis of your IRD?

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* 10. How many medical centres/health centres/vision centres (please include all public and private visits) did you attend before finding your genetic diagnosis?

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* 11. How long did it take from you initially were aware of a problem with your vision and obtaining a genetic test? 

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* 12. Were you satisfied with how your genetic test result and diagnosis was explained to you?

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* 13. How would you like the explanation of the genetic test result and diagnosis improved? Please describe in the comment box below.

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* 14. Was your DNA sample (biological sample you provide for genetic testing) sent by post for your genetic test?

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* 15. Did you have to travel to another town or city to have your genetic test?

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* 16. Did you have to travel to another state or country to have your genetic test?

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* 17. Was your genetic test part of a research project?

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* 18. How long did it take to receive the results of the genetic test?

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* 19. How were there results of the genetic test communicated to you?

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* 20. Did you have to pay for a genetic test?

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* 21. What currency was used to pay for the genetic test?

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* 22. What was the approximate cost of the genetic testing in the currency you have indicated?

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* 23. What was the program covering the cost for your genetic testing?

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* 24. Was genetic counselling offererd to you prior to your genetic test?

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* 25. Was genetic Counselling offered to you after your genetic test?

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* 26. How was the genetic counselling provided?

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* 27. Did you have to travel to another town or city to receive your genetic counselling?

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* 28. Did you have to travel to another state or country for genetic counselling.

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* 29. Who has provided the counselling to you?

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* 30. Did you have to pay for genetic counselling?

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* 31. What currency was used to pay for genetic counselling?

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* 32. In the currency indicated by you above, what was the approximate total cost of genetic counselling?

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* 33. If the initial results of your genetic test were unclear or of unknown significance were you updated with any information to your genetic test result?

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* 34. Do you think there is enough awareness among healthcare professionals about Inherited Retinal Degenerations (IRDs?)

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* 35. Do you think there is enough awareness among healthcare professionals about the benefits of genetic testing for IRDs?

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* 36. Would you go through your genetic testing experience again? In the sense was it worth it?

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* 37. Would you be willing to share your genetic data for the purpose of research?

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* 38. If you would like to share other information with respect to your genetic testing and counselling experience, and what improvements you would like to see, please do so in comment box below:

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