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No-Charge Genetic Testing Program for Alport Syndrome in the United States!

KIDNEYCODE is an initiative sponsored by Reata Pharmaceuticals in partnership with Invitae:
• Is available for anyone in the U.S. with symptoms or family history of Alport syndrome or FSGS.
• Removes the obstacle of cost for important genetic testing. There is no cost to the patient. Reata is the sponsor of this program.
• Requires your heathcare provider to submit the order (Primary care, Nephrologist, or other healthcare provider).
• Provides optional genetic counseling following test results.

How It Works:

-Your healthcare provider confirms that you meet the criteria for the program.

-Your healthcare provider will inform you of the specifics regarding patient consent within this program.

-The patient will fill out the Requisition Form to the best of their ability. Please use your full legal name at all times during the genetic testing process. Additionally, be sure to include an accurate email address so you can access the KIDNEYCODE online portal.

-Your physician will fill out any remaining fields on the form, inform you of the specifics regarding patient consent within this program. sign and date the Requisition Form, and they will send the completed form to Invitae via email or fax (details are on the form).

-Your healthcare provider will then sign up at the KIDNEYCODE website and then place an order via the online request form.

-You provide a biosample (blood or saliva) as decided with your doctor, and the biosample is then returned to Invitae (instructions on returning are provided when sample kit arrives).

-You can create an online account at the KIDNEYCODE website to check the status of your genetic test. You can also call Client Services at Invitae at (800) 436-3037 and they will walk you through the steps of setting up an account if you are experiencing any difficulties.

Test Results:

-Results are typically available within 10-21 days of the lab receiving the sample.

-The program sponsor receives your de-identified information, at no point is any identifiable information shared.

No-Charge Genetic Counseling Opportunity

Individuals tested through the KIDNEYCODE program are eligible for post-test genetic counseling to help them understand their results. This service is provided through GeneMatters, a third-party genetic counseling service, and is made available by Invitae at no charge as part of the program. To schedule a genetic counseling appointment, please contact GeneMatters at 1-866-741-5331 or schedule online using partner code: CKD.

The following are frequently asked questions about the KIDNEYCODE program:

How do I order my genetic testing kit?

Testing kits can only be ordered by your healthcare provider (a primary care or nephrologist), but you can get the process started. To begin, download and print the test Requisition Form on the KIDNEYCODE website and fill out your patient information using your full legal name in all required areas. Please note: ASF contact information should never be listed in the Practice Information area – this area is reserved for your attending physician’s contact information. You can decide with your doctor to opt for a blood or saliva sample kit, but saliva kits are typically easier. Blood kits can be sent to clinicians office for sample collection, or saliva kits can be sent to your home for remote sample collection – be sure to tell your physician to include your home shipping address, not the clinic’s, for saliva kits. Once the kit arrives, follow the instructions to supply the sample and return the kit using the prepaid shipping label. Ensure that your provider completes and submits the test Requisition Form to Invitae (via fax or email – see form).

Do the testing results have to go directly to my doctor?

Yes. The test results will be sent from Invitae to your physician. Your physician will then share the results with you.

Are my results confidential?

Yes. All results are confidential. The sponsor of KIDNEYCODE (Reata Pharmaceuticals) does not receive individually identifiable patient information.

What if I don’t understand my results?

Individuals tested through KIDNEYCODE are eligible for post-test genetic counseling to help them understand their test results. This service is provided through GeneMatters, a third-party genetic counseling service, and is made available by Invitae at no charge as part of the program. To schedule a genetic counseling appointment after receiving results from your KIDNEYCODE testing, contact GeneMatters at 1-866-741-5331 or schedule online at www.gene-matters.com using partner code: CKD.

What if I am told I have a variant of uncertain significance (VUS)?

Please speak with your doctor if you have questions about the results of your genetic test. Additionally, the genetic counseling offered by GeneMatters can be helpful to better understand your specific results. You are encouraged to share with both your physician and geneticist your family history with renal disease, particularly Alport syndrome, which can help the counselor better interpret your test results.

For information regarding instructions, forms to request testing, privacy, data collection, contact information, and recent research supporting the need for genetic testing, visit the program website: KIDNEYCODE.

While Reata provides certain financial support for this program, tests and services are performed by independent third parties. Healthcare professionals must confirm that patients satisfy certain criteria to use the program. Reata receives certain aggregated and de-identified data from this program, but at no time does Reata receive individually identifiable patient information. Reata receives certain contact information for healthcare professionals who use this program. Genetic testing and counseling are available in the US only. Healthcare professionals and patients who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use or support any Reata product. This program does not replace directly or indirectly the professional medical advice of a treating physician or healthcare professional. All treatment related decisions must be determined by a healthcare professional.

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