The ID YOUR IRD initiative explained.

Before you decide if the ID YOUR IRD gene testing initiative may be right for you, it helps to be informed. Here's an overview of who's involved and what happens during this gene testing initiative.

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ID YOUR IRD IS SIMPLE AND FREE.

The ID YOUR IRD gene testing initiative is specifically designed to be easily accessible. The genetic test and optional, confidential telephone consultation sessions with a genetic counselor are available at no cost to all eligible U.S. residents with certain inherited retinal diseases (IRDs), upon authorization by their doctor. 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.

We have partnered with PreventionGenetics, a CLIA- and ISO-accredited laboratory, to provide the genetic test at no cost to you. Regardless of insurance status, ID YOUR IRD will be available free of charge to all eligible U.S. residents. Your information is confidential and will not be shared with anyone, nor used for any purpose, not authorized by you. Please see the terms and conditions of the ID YOUR IRD initiative.

WHO'S INVOLVED.

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PATIENT LIAISON

Patient Liaisons are representatives from Spark Therapeutics who can help to evaluate if you may be eligible to participate in the ID YOUR IRD gene testing initiative. Your Patient Liaison is available to answer your questions about the initiative and will help you understand the consent process that is necessary to participate in the initiative.

PATIENT
LIAISON
CONNECT
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YOUR IRD DOCTOR

The doctor you consulted with for your IRD is your main ID YOUR IRD companion and works with you to determine your eligibility. If so, he or she authorizes your participation, and will ask you or your parent/legal guardian to fill out a consent form to enroll in this initiative. Your doctor will then order your genetic test, and contact you to discuss your genetic test results when they become available.

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GENETIC COUNSELOR

If you are eligible for the ID YOUR IRD initiative, and your doctor authorizes your participation, Spark Therapeutics will cover the cost of optional, confidential telephone consultation sessions with a genetic counselor. Genetic counselors provide personalized care to help people understand and adapt to the medical, psychological and familial implications of genetic conditions. Your Patient Liaison from Spark Therapeutics can connect you with a genetic counselor who can help you and your doctor make informed decisions based on complex genetic information.

WHAT TO DO.

DECIDE IF THIS INITIATIVE MAY BE RIGHT FOR YOU

The ID YOUR IRD 4-question screener will determine if you prequalify for our gene testing initiative. If you do, one of the Patient Liaisons from Spark Therapeutics will be in touch to answer questions and discuss eligibility.

In order to participate, your doctor must authorize and order the 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 is subject to the terms and conditions of the ID YOUR IRD initiative.

SCHEDULE YOUR DOCTOR VISIT

The next step is to schedule an appointment with your doctor to discuss participating in the ID YOUR IRD initiative. It is your doctor's role to confirm that you are eligible, get your consent to participate, and authorize your genetic test. Your doctor will ask you or your parent/legal guardian to fill out a consent form. You will also
 need to provide your doctor with a blood or saliva sample, which will then be sent to PreventionGenetics, an accredited laboratory, for testing and analysis.

DISCUSS THE RESULTS

Results may take up to 6 weeks, but typically arrive within 30 days. Your doctor will walk you through your results to answer questions you and your family might have. You can also ask your Patient Liaison to put you in touch with a genetic counselor at no cost to you. All participants whose doctor orders the genetic test will receive results, which may be "Positive," "Negative," or "Inconclusive."

ELIGIBILITY AND PREQUALIFICATION

  • Complete the 4-question screener
  • Talk to a Patient Liaison from Spark Therapeutics

TALK TO YOUR DOCTOR

  • Schedule an appointment with your doctor to discuss ID YOUR IRD
  • Eligibility confirmed and patient consent form completed
  • Doctor authorizes your participation and orders your genetic test
  • Doctor sends blood or saliva sample to laboratory
  • Genetic counseling session via telephone (optional and confidential)

LABORATORY
(4-6 WEEKS)

  • Sample analyzed at PreventionGenetics, a CLIA- and ISO-accredited laboratory
  • Test results sent back to your doctor

DISCUSS YOUR RESULTS

  • Once received, your doctor will contact you to discuss the test results
  • Genetic counseling session via telephone (optional and confidential)

What do these test results mean?

NEXT: GET THE FACTS