Welcome to ID YOUR IRD.

The ID YOUR IRD gene testing initiative (for U.S. residents only) is designed to provide access to genetic testing for eligible people with certain inherited retinal diseases (IRDs) at no cost, subject to the terms and conditions of this initiative. This genetic test may offer insight into the underlying cause of vision impairment. With authorization from your doctor, this genetic test requires that a simple blood or saliva sample be taken and sent to our laboratory partner. The ID YOUR IRD gene testing initiative will not be able to provide genetic information to everyone with an IRD, but the initiative aims to help inform as many people as possible. Interested? Great!


TAKE OUR QUICK,
4-QUESTION SCREENER

Note: If you are not the person with the IRD, answer the following 4 questions from his or her point of view.

Before the age of 30, were you diagnosed with Leber’s Congenital Amaurosis (LCA)?

Do you have significantly more trouble than most people seeing in dim lighting and take much longer to visually adjust from a brighter to a darker environment?

Have your visual problems worsened over time?

Do you or did you ever have any of the following: significant hearing loss, kidney problems, extra fingers or toes, severe brain abnormalities?

Thank you for taking the screener. At this time, your answers may require further assessment to see if you would be a good candidate for the initiative.


The ID YOUR IRD gene panel is not designed to give information on all IRDs. Other genetic tests might be useful for you. Your doctor is always your first point of contact for any additional questions about genetic testing that you may have. You may also contact a Patient Liaison from Spark Therapeutics who can help answer your questions about the initiative.

We invite you to use the below links to access additional resources on IRDs and genetic testing information, including our community support website, aSharedVision.com.

This website offers:

  • Community stories about people living with an IRD
  • Insight into gene therapy research
  • A quarterly newsletter to help you keep in touch and stay informed
VISIT aSharedVision IRD and genetic testing information

Your answers indicate that you may be eligible for ID YOUR IRD.


Contact us for more information.


To have a Patient Liaison from Spark Therapeutics share more about our initiative, please enter your contact details below. Alternatively, you can contact us at 1-855-SPARKTX (1.855.772.7589) or [email protected] If you'd prefer to discuss these survey results and the initiative with your doctor, you can download the results and an overview of ID YOUR IRD below.

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ONLINE

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PHONE

Call us at 1-855-SPARKTX (1.855.772.7589)

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EMAIL

Email us at [email protected]

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If you’d prefer to save or print your survey results, download them here.

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You can download an overview of the program to discuss with your doctor here.

Please note that to participate in the ID YOUR IRD initiative, you will need to talk to your doctor. It is your doctor's role to confirm your eligibility, authorize your participation, and order the genetic test for you. The ID YOUR IRD gene testing initiative will not be able to provide genetic information to everyone with an IRD, but the initiative aims to help inform as many people as possible. Participation in ID YOUR IRD is subject to the terms and conditions of the program. Please see terms and conditions here.

Thank you!


A Patient Liaison from Spark Therapeutics will be in touch with you in the next few days.


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If you’d prefer to save or print your survey results, download them here.


Find out who's involved and what happens along the way.


NEXT: OVERVIEW

Through the ID YOUR IRD gene testing initiative, Spark Therapeutics aspires to help people living with certain inherited retinal diseases (IRDs) by providing access to genetic information that can empower their decisions. This initiative is open to U.S. residents only, subject to the terms and conditions of the program.

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Learn about the initiative

Find out who's involved and what happens on your genetic testing journey.


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Ask the right questions

Get tips on what to ask your doctor to find out if ID YOUR IRD may be right for you.


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Download your guide to the initiative

Learn about genetic testing and the information ID YOUR IRD can provide.


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Identifying your IRD:

Information that can empower your decisions.

Your doctor can confirm your eligibility, authorize your participation, and order a genetic test for you that will use a blood or saliva sample. IRD genetic testing can't tell if you're at risk for other health conditions—but it may offer insight into the underlying cause of vision impairment. The ID YOUR IRD gene testing initiative will not be able to provide genetic information to everyone with an IRD, but the initiative aims to help inform as many people as possible.

NEXT: OVERVIEW

Download a guide to the ID YOUR IRD initiative.

This downloadable resource contains important information for you and your family, including:

  • An overview of the gene testing initiative
  • Facts about genetic testing for retinal disease
  • A doctor conversation guide
  • The full ID YOUR IRD terms and conditions

DOWNLOAD NOW