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  • What is APOL1-mediated kidney disease?
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The difference between chronic kidney disease and APOL1-mediated kidney disease

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What is chronic kidney disease?

Chronic kidney disease is a condition where the kidneys don’t work the way they’re supposed to, causing many different health issues.

Kidneys are important for many processes in the body. The kidney’s main job is to filter blood, keeping in vital salts and minerals and removing waste in your urine (pee). The kidney also releases hormones that tell your body to control blood pressure, make new blood cells, and make your bones stronger. When kidneys don’t work properly, it can cause many health issues.

What is APOL1-mediated kidney disease?

APOL1-mediated kidney disease is a type of kidney disease that is caused by a substance in our body called the APOL1 protein (also known as the apolipoprotein L1). We all have the APOL1 protein; however, some people have differences in their DNA (the genetic material in our body that carries information about how our body works) that means they carry a modified type of APOL1 protein, known as a variant. This puts them at a higher risk for chronic kidney disease. How this variant of APOL1 causes kidney disease is still not known.

This variant of APOL1 is more likely to occur in people of African ancestry. African ancestry includes people who identify as African American, Black, Caribbean, Sub-Saharan African, and Latino (Cuban, Mexican, Puerto Rican or South or Central American).

If you have kidney disease, you may not know if you carry this variant of APOL1 protein. The only way to find out if you have the variant of APOL1 that puts you at risk for kidney disease is to examine your DNA, in a process called genetic testing.

Why it’s important to understand more about APOL1-mediated kidney disease

APOL1-mediated kidney disease is caused by differences in DNA, called variants. You share some of your DNA with your blood relatives. This means that APOL1-mediated kidney disease can be passed down through generations and can affect many people within the same family.

Right now, treatments for chronic kidney disease are only able to control some parts of the disease, like high blood pressure. Therefore, it is important to research treatments that could help stop kidney function from getting worse, as well as investigating the cause of chronic kidney disease.

It’s important that we start learning more about APOL1-mediated kidney disease now, so that we can potentially help people living with this disease in the future.

You can see if you meet some of the criteria to take part by completing the questionnaire here.

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Please note that "We Are COUCH Ltd" (trading as COUCH Health) are acting as a data processor on behalf of Vertex when collecting your data as part of the pre-screening process for the AMPLITUDE study. The pre-screener information you submit will not be shared with Vertex. You will have the option to delete the information after you complete the pre-screening process.

In the event you may be eligible for this study, you will have the option to provide contact information and allow COUCH Health to forward your information to a research site. In the event you are not eligible for this study, you will have the option to provide contact information to be contacted if the eligibility criteria change for the AMPLITUDE study or for future Vertex studies.

Privacy Information for Residents of California: We Are COUCH Ltd (trading as COUCH Health) is a service provider to the sponsor of the AMPLITUDE study, Vertex, when collecting data as part of this pre-screening questionnaire. The categories of information collected via this questionnaire include: information about your health and ancestry (to determine eligibility) as well as contact information (in the event you choose to share it).

The information will be used only to determine whether you are eligible for this research study and, if you consent, to inform you of potential Vertex research studies in the future. If your answers to the questionnaire indicate you may be eligible for this study and you elect to share your contact information, COUCH Health will share your information with a research site, which will contact you to do a full screening. Even if you are not found to be eligible for this study, you will have the option for COUCH Health to keep your information on file for a period of time that you elect and notify you of future Vertex studies.

For a fuller description of Vertex’s privacy practices and of your privacy rights, please see Vertex’s Privacy Notice at https://www.vrtx.com/english-privacy-us-residents/.

If you have a question or want to exercise your privacy rights, please contact COUCH Health at amplitude@couchhealth.co as Vertex will not receive any information about you from this website.