Select Language
FREE MEMBERSHIP DONATE NOW
Select Page

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

KIDNEYCODE, a new 2019 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 completes an online request form for a test kit.
• Your healthcare provider signs the completed Test Requisition Form and informs you of the specifics regarding patient consent within this program.
• You provide a blood or saliva sample as decided with your doctor.

The 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.

The following are frequently asked questions about this new 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. 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. 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.

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.

Lastly, once you receive your results, be sure to digitally submit them to ASTOR to help advance Alport syndrome research. Not a member of the patient registry? Learn more.

Select Language
X