Kidney Disease Study FAQ

As a thank you for participating in our study, you’ll have the option to receive an ancestry report with a genetic estimate of where your ancestors may have come from.  This is entirely optional— you can choose whether or not to view it. (Note: If you unsubscribe from study emails, you won’t receive this notification.)

It typically takes up to 9 months after your saliva sample is received at the lab for your ancestry report to become available. Reports are processed in batches, so the more participants who join, the sooner your report may be ready. You will receive an email when your report is ready to be viewed in your account profile. You can login here and click on the ancestry tab to view it. (Note: If you unsubscribe from our communication emails you will not receive this notification when your report is ready to be viewed).

For more information about our ancestry report, click here.

We appreciate that some people want to participate in many research studies. For our studies, we ask that you only enroll in one of our studies, so that you only provide a saliva sample to us once. As long as you take all of the surveys in the study in which you enroll, your data will be used in and will benefit all of our studies.

To participate in the study, you’ll need to review and e-sign the consent form, answer a few health-related surveys, and return the saliva collection kit (or “spit kit”) that we’ll mail to you. That’s all that’s required.

If you’re interested, you can also choose to complete additional health surveys and allow access to parts of your electronic health records—both of which would help strengthen the research.

As a thank-you for participating, we’ll send you an ancestry report several months after we receive your saliva sample.

The study does NOT require an invitation—so feel free to invite your family and friends!

Anyone age 18 or older living in the U.S. can participate, including both men and women, people who have had kidney disease, and people who have never had kidney disease.

The more diversity, the better— we’re looking for participants from all walks of life!

Please encourage your friends and family to sign up using this link: join.rugcc.org/kidney

You can also share this flyer with your friends, family, community groups, faith organizations, or anywhere else you connect with others.

Right-click and save or print this flyer: Study Flyer

The best way to support our research is by referring others to join the study. Please consider inviting your family and friends to participate. You can also help by sharing our study flyer with your social, religious, or community groups—whether they meet online or in person.

If you live in an adult or independent living community, feel free to post the flyer on a bulletin board or include the study in a community newsletter.

The more diverse our participants are, the better! We’re looking for people from all backgrounds and experiences—diversity strengthens our research.

• Use this link to refer others: https://www.kdstudy.org/r
• Eligibility: Anyone age 18 or older living in the U.S.
• Download and share our study flyer here: Study Flyer.

Suggested study description (for email or social media):

Consider joining the Rutgers University research study on the genetics of kidney disease! Anyone over age 18 living in the U.S. is eligible—males, females, people with or without PH. Participation is quick and easy. The study is online, and you provide a saliva sample by mail. As a thank-you, you’ll receive free information about your ancestry. Your participation will help advance research on how genes influence kidney disease risk and may lead to better treatments.

One common issue when creating a study account is using a password that doesn’t meet our requirements.

Study passwords:

• Must be at least 8 characters
• Must contain at least 1 capital AND 1 lowercase letter
• Must contain at least 1 number
• Must contain at least 1 of these special characters:    ! % @ # $ ^ & [ ] { } + = \ – ~ _ |
• May not include * as “special character”

Each time you log in— including when creating your account—you’ll be asked to enter a one-time passcode that is sent to your email.  These emails come from kidneystudy@mail.rugcc.org and may take a few minutes to arrive. Be sure to check your Spam or Junk folders if you don’t see it.

If you have multiple email accounts, you may forget which one you used to signup. To find out, search your email inboxes for “rugcc.org”—the correct account will have at least one email from an address ending in rugcc.org. If you enter the wrong password five times, your account will be locked.  If this happens, please contact us at rugcc-kidney-support@rutgers.edu .

Due to technical aspects of our study process, it may take up to four weeks for your saliva sample to be received and logged.  Once your sample is received, we’ll send you an email confirmation.  If it’s been more than four weeks since you submitted your sample and you haven’t received this email, try the following:

• Search your inbox for “We’ve received your sample”
• Look for messages from rugcc.org
• Be sure to check your Junk or Spam folders as well

The amount of saliva needed for this study is just 1 milliliter (mL), that’s about 1/5 of a teaspoon. The collection tube can hold more than that, but you should only to fill it up to the dark black FILL LINE or slightly more. The actual collection area is only about ¼ inch deep.

If your tube has a lot of bubbles after collection,  gently tap it on a hard surface and wait for the bubbles to settle before checking if you’ve reached the fill line.

To ensure a high-quality saliva sample, do not eat, drink, smoke or vape, chew gum, or use mouthwash for at least 30 minutes before collecting your saliva.

If you’re having trouble producing enough saliva, make sure you’re well-hydrated beforehand (but wait 30 minutes after drinking any fluids before collecting your saliva).  For some people, smelling or imagining a cut lemon may help. Additional tips can be found here, https://rugcc.rutgers.edu/how-to-provide-a-saliva-sample/ . A saliva sample is required for the study, so if you are unable to provide enough saliva, please send us an email and we will remove you from the study.

If you have an upper-respiratory infection (like coughing, post-nasal drip, or a runny nose), please wait at least one week after your symptoms clear before collecting your sample. If you’re sick with another type of illness (but not coughing or congested), you may still collect your sample if you feel well enough.

If your kit arrives while you’re traveling, that’s okay, just collect your saliva once you’re back.  The collection tube is stable at room temperature for several months.

Your DNA from the saliva sample will be sequenced, and your DNA data, along with your survey responses (and electronic health information, if you choose to share it), will be included in research studies aimed at better understanding the genetic factors that contribute to kidney disease risk.

No. Only one designated researcher—a Rutgers research scientist—will have access to information that directly identifies you, such as your name and address. All other members of the study team will only see a unique code assigned to your data. This code does not include your name or contact details.

Your study data is stored securely, using encryption and industry best-practice security protocols to protect your privacy.

Also read the F.A.Q question below: How is my data kept secure?

All efforts will be made to keep your personal information confidential.  Each participant will be assigned a unique code, and all collected data will be labeled with this code rather than your name or other identifying information.  Only the Principal Investigator and authorized research staff will have access to your identity.

Electronic files will be password-protected, encrypted, and stored on secure servers. The identifier codes and data files will be kept in separate locations to enhance security. The study platform is built to meet the HITRUST V9.3 Common Security Framework standards, and all data is encrypted both when stored (“at rest”) and while being transmitted.

Our data storage and research practices follow HIPAA regulations and information security best practices, including the use of firewalls, content-security policies, and secure virtual private networks (VPNs).

People naturally have genetic differences that can lead to slightly different versions of the proteins our bodies make. In some cases, these protein differences can raise or lower the risk of diseases, like kidney disease.

By studying these genetic variations, researchers can identify which versions of the proteins help protect against disease. This knowledge can be used to develop new drugs that mimic or enhance the protective effects of those protein versions—potentially leading to better treatments or even prevention strategies.

No. This is a research  study, not a clinical test, so we do not return individual results (except for an optional ancestry report as a thank-you).

Our study is designed to better understand the genetics of kidney disease at a population level. While clinical testing is meant to return results to individuals, research studies typically do not—for both legal and scientific reasons. In our case: .

• Sequencing is done in a research lab, not a clinical lab approved to return results.
• We analyze data across groups, not individuals.
• Returning results would require additional testing and support, such as a genetic counselor, which is beyond the scope of our current funding.

 

The National Kidney Foundation has a good website on this subject:  https://www.kidney.org/

If you’re interested in learning whether you carry specific genetic mutations linked to kidney disease, we recommend meeting with a genetic counselor—a medical professional who can order the right tests, explain your results, and discuss your options.

• • Find a genetic counselor near you: https://findageneticcounselor.nsgc.org

 

• You may also consider clinical-grade direct-to-consumer genetic testing services—search online using that phrase.

Send email to us at: rugcc-kd-support@rutgers.edu