Asking the right questions can lead to the right conversation.
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You've gotten the facts and taken the ID YOUR IRD 4-question screener. Now it's time to ask your doctor if ID YOUR IRD could be right for you. If he or she feels that it is, your doctor will confirm your eligibility and must authorize your participation and order the test on your behalf. Even if you're still unsure about the initiative, learning how to start the conversation with your doctor, and what to ask, could help inform your decision.
Use our Doctor Essentials as a conversation starter.
Unsure what to tell your doctor about ID YOUR IRD? The information contained in the Doctor Essentials guide can help. It contains information on your doctor's role, a guide for determining patient eligibility, and more.DOWNLOAD
Ask your doctor the right questions.
It's important that you and your family are informed before, during, and after the ID YOUR IRD initiative. A good way to ensure this happens is by asking questions. Here are some to keep in mind when talking with your doctor:
- What does getting a genetic test involve?
- Is getting a genetic test like this one right for me?
- Who has access to my information?
- Have I had a genetic test before? What were the results?
- My ID YOUR IRD test results were negative or inconclusive. What now?
- My ID YOUR IRD test results identified one or more genetic mutations causing my retinal disease. What are my options?
Genetic counselors can help.
Genetic counselors are available to provide valuable information during the testing initiative and help interpret test results. Once you have enrolled in ID YOUR IRD and provided your blood or saliva sample, your Patient Liaison from Spark Therapeutics can help set up optional, confidential telephone consultations with a genetic counselor for you.