Introduction:

We are inviting you to be in a research Registry. The purpose of this statement is to give you the information you will need to help you decide whether to be in the Registry. We are happy to answer any questions.

Why have a registry?

We want to conduct research on kidney problems, dialysis, and related conditions now and in the future. A registry of people with and without these conditions makes research possible. We want to contact people who want to participate in research, and whom we think may to eligible to take part in future studies.

Taking part in the registry

If you choose to be in the Registry, we would like to record your name and contact information.

- Questionnaire: We will ask some questions, such as age gender, ethnicity, health questions, medications, and where you get your health care. It will take about 15 minutes to complete.

We may contact you in the future, if we think that you may be a good fit for a research project based on your answers to the questions. We can't promise that we will find a study for you. We may contact you several times a year. You can tell us if you would like to be contacted less often. Taking part in the Registry is voluntary and you can stop participating in the Registry at any time. Unless you stop your participation, we may contact you in the future indefinitely.

- Phone call: If we do call about a possible study, then we will ask you more questions to see how good a fit you are for that particular study. The questions we ask will depend on the study. The questions will be related to your recent health status and health care.

- Screening visit: We will invite you to come to a screening visit for that study, if it looks like you may qualify. You will decide whether or not you want to come to the screening visit. If you do, we may record some information from the study’s screening visit to the Registry: what medications you take, allergies, blood and urine tests related to kidney health.

After the screening visit, we will let you know for sure if you are eligible for the new study or not.

Newsletter: We would like to keep in contact with you by sending out a Kidney Research Institute newsletter to keep you informed of our discoveries, progress, and new studies that are starting. You may choose not to receive the newsletter.

What are possible risks of taking part in a registry?

There are no physical risks from taking part in the Registry. Some people feel that providing information is an invasion of privacy and prefer not be contacted about research projects. Please call us at 206-616-8574 if you believe that you’ve been harmed by being in the Registry.

What are the alternatives to taking part in a registry?

Taking part in this Registry is voluntary. You can stop at any time. If you choose not to take part in this Registry, we will not record and keep any information about you.

What are possible benefits of taking part in a registry?

The only benefit from taking part in this Registry is that you may learn about opportunities to take part in studies related to the kidney. We hope that future studies will teach us more about people with kidney disease and related conditions.

Other Information

Even if you decide now that information about you can be used for research, you can change your mind later. You can withdraw from the Registry by requesting to do so in writing, by sending a letter to: Bryan Kestenbaum, MD MS, 325 9th Avenue, Box 359606, Seattle, WA 98104. If you do withdraw, there will be no penalty. You will not lose any benefits to which you are otherwise entitled.

Researchers will keep the study information confidential and secure. We will keep your information in the registry indefinitely.

You will not have to pay anything to be a part of this Registry, and you will not be paid to take part in the registry.

Questions

We will be happy to answer any questions about this Registry, please contact us at 206-616-8574 or email us at registry@kri.washington.edu

If you have any questions about your rights as a research subject, you may call the University of Washington Human Subjects Division at (206) 543-0098.

Thank you!

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