Frequently Asked Questions

To participate in the study, you need to review and e-sign the consent to participate, answer several survey questions about your health, and then return the “spit kit” that we will mail to you for collecting your saliva sample. That’s all that is required.

If you are interested, you can take additional health-related surveys, and you may choose to allow access to part of your electronic health records, both of which would enhance the study. Also, as a thanks for participating, we will offer you an ancestry report several months after you return your saliva.

All efforts will be made to keep the personal information in your research record confidential.  A unique code will be assigned to each participant, and the collected data will be recorded using this code for identification purposes.  The Principal Investigator and research personnel will be the only people with access to the master code identifier.  Electronic files will be password-protected, encrypted, and stored on secure computer servers and will only be accessible to authorized research personnel. The master code identifier and the data files will be kept in two separate locations. The study platform is built to comply with the HITRUST V9.3 Common Security Framework, and all data is encrypted at rest and in transit. Our research and data storage comply with HIPAA rules and Information Security best practices, including the use of firewall rules, content-security policies, and secure virtual private networks.

The study does NOT require an invitation, so please invite your family and friends!  Anyone 18 or older living in the US can participate, including both males and females and people who have had breast or other cancer and people who have never had cancer. The more diversity, the better for our study – we need people from all walks of life! Encourage your friends and family members to sign up! They can use this link: http://join.rugcc.org/r    Or, share this flyer with your friends and families, friend groups, faith or living communities, etc. Right-click and save or print this flyer: Study Flyer

A common problem that occurs when creating your account on our study portal is that your password doesn’t meet our password 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 access your account, including when you first create your account, you will need to enter a one-time passcode.  The one-time passcode is sent to you by email which comes from bcstudy@mail.rugcc.org. It may take several minutes for this email to arrive. The one-time passcode email may go to your Junk or Spam mailbox, so be sure to check there. 

Another issue that may occur when trying to access your study account is that if you have multiple email accounts, you may forget which one you used when signing up for the study. You can figure out which email address you used for the study by searching your email for “rugcc.org”.  The account you used to enroll in the study should have at least one, possibly several, emails from an address that includes “rugcc.org” 

You may wind up locked out of your account if you try to enter your password incorrectly 5 times.  If that happens, send email to

rugcc-support@rutgers.edu

Due to technical reasons related to our study design, it may take up to four weeks for your sample to be received.  When your saliva kit is received, we send you an email notice.  If it has been more than 4 weeks since you submitted your sample and you have not received this email notice, search your email for “We’ve received your sample” or for emails from rugcc.org. Be sure to also check your Junk Mail or Spam mailbox. 

As a thank you for participating in our study, we will offer you an ancestry report with an estimation of where your ancestors are from.  This is optional; you choose whether you want to read your report. It takes approximately 6 months after your saliva is received in the lab for your ancestry report to become available.  Ancestry is determined in batches, so the sooner we sign up more participants, the sooner your ancestry results become available.

The amount of saliva that is needed for this study is just 1 mL, or 1 milliliter.  This is about 1/5th of a teaspoon. The collection tube you will use can hold much more than that, but you only need to fill it to the dark black FILL LINE, and the collection area is about ¼ inch. If there are many bubbles in the tube after you collect your saliva, tap the tube gently and wait for the bubbles to subside before checking whether you have provided enough. 

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

If you are having trouble producing enough saliva, make sure you are well-hydrated (but wait 30 minutes after drinking before collecting your saliva).  For some people, looking at and smelling a cut lemon may help, or if you don’t have one you can try visualizing a lemon. You can read other tips here. Saliva 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 are sick with an upper-respiratory infection (e.g. coughing, post-nasal drip, runny nose), please wait until 1 week after your symptoms have cleared before providing your saliva sample. If you are sick with other illnesses, you can collect and return your saliva while sick if you feel well enough.

If you are traveling when your saliva kit arrives at your house, you can just collect your saliva after you return.  The collection kit is good for several months if stored at room temperature.

Your DNA in the saliva will be sequenced, and the DNA sequence, along with your survey answers (and electronic health data, if you opt in for that), will be included in research studies to better understand the genetic contributions to the risk of developing breast cancer.

Only one of the researchers, who is a Rutgers research scientist, will have access to information that identifies you, such as your name and address. Everyone else on the study team will only have access to a unique code that links to your data and excludes your name or contact information. The study data is stored under encryption and best-practice security protocols.

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

There is a significant amount of genetic variation among people, and some of this variation results in slightly different versions of the proteins that our bodies produce. Sometimes, those different protein versions increase or decrease the risk of disease, such as breast cancer or kidney disease or pulmonary hypertension. Knowledge of such different protein versions and their effects can be used to target drugs that mimic the disease-lowering versions of those proteins.

The best way to help our research study is to refer others to participate. Consider asking your family and friends to join the study. To help even more, share our study flyer with your social or religious groups that meet online or in person. If you live in an adult or independent living community, you may consider posting our flyer on a notice board or including our study in a newsletter. The more diverse our study participants are, the better – we need people from all walks of life.

A good link to use for referrals is:http://join.rugcc.org/r Remember, anyone age 18 and older living in the US is eligible.

Feel free to share our flyer, which you can download here: Study Flyer. Also, here is a study description you may use if you are emailing others:

Consider joining the Rutgers University research study on the genetics of breast cancer! Anyone over age 18 living in the US is eligible – males, females, cancer or no cancer. Participation is quick and easy. The study is conducted online and you’ll supply a saliva sample through the mail. Get info about your ancestry for free as a thank you! This study will help improve our understanding of how genes cause breast cancer, which may lead to better treatments!

The American Cancer Society has a good website on the subject.  https://www.cancer.org/cancer/types/breast-cancer/risk-and-prevention.html

No. The study will not be able to return any results to you other than information about your genetic ancestry.

Our study is a research study, not a diagnostic test. Testing is designed to provide the results of the test back to you, while research studies use the data for research to gain broader knowledge; however, for legal reasons, they typically do not return the results to the participants. Our research study does not return study results to the participants.

To learn whether you carry specific mutations known to impact your risk of breast cancer, our recommendation is to meet with a Genetic Counselor, who is a medical professional who can order the appropriate tests and can return your results and discuss them with you. You can locate a genetic counselor near you here: https://findageneticcounselor.nsgc.org/. Study participants near New Brunswick, NJ, can contact the CINJ LIFE Center https://cinj.org/patient-care/adult/GeneticCounseling.  Direct-to-consumer companies are also a possibility; try searching for the phrase “clinical-grade genetic testing services.”