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For Participants


 


 

Active Study Locations

  • Duke South Clinic 2K — Cardiac Diagnostic Unit
  • Duke University Hospital 7200 — Cardiac Diagnostic Lab
  • Duke University Hospital Cardiac Catheterization Lab

 


How do I participate?

You will receive a message from us in your Duke MyChart portal if you match a group that will help our research and have an upcoming appointment in a location where our study team members are working. Invitations will be sent over the next six years, but not everyone will receive a message. Eligibility is dependent on having an appointment where study team members are located.

If you receive a message, you will get information about the study and a link to the study consent form, so you can join if you want to. It is up to you to decide if you want to join or not. We are available to answer any questions you may have before and after signing up.

If you choose to join, we will collect either a blood or a saliva sample from you. Your MyChart message will tell you which way will be used.

  • The blood sample (about 2.5 tablespoons) will be added to an appointment  that you have coming up at a Duke Health clinic or hospital.
  • The saliva sample (less than half a teaspoon) will be mailed to you in a kit, which will include a prepaid envelope for you to mail us back your sample.

No matter which way you participate, it won’t cost you anything.

If you have decided to join OneDukeGen and will be providing a blood sample at an upcoming appointment, it is important that you keep that appointment – if the appointment is missed or rescheduled, we may not have another opportunity to collect the blood sample we need.

We may also ask you to provide a stool sample. You may decline providing this sample. Like the saliva sample, this sample will be collected using a kit mailed to your home. It will also include pre-paid materials for you to mail the kit back to us.

 

What will happen to my samples?

Part of your sample will go to a laboratory for genomic sequencing. The rest of your sample, along with anything left over after sequencing, will be placed into a secure biorepository for future research. We will combine your samples with the samples from other people who also join. By looking for patterns, we hope to find new ways to detect, treat, and maybe even prevent or cure health problems.

 

Will I get back any information?

If we find out that you have a DNA difference that increases your risk of a treatable health condition, or if in certain cases we find a negative result (information indicating that you do not have a specific difference in your DNA), you can decide if you want to know about it. If we don’t find any health-related changes in your DNA, we will not contact you. Most participants do not have a DNA difference that increases their risk for disease. See ‘Getting Results Back’ below for additional information.

 


Getting Results Back

 

What kind of results will I receive?

If you choose to receive results from this study, we will tell you if you have a DNA difference that increases your risk for a treatable or preventable health condition. The most common examples are increased risk for heart disease, high cholesterol, and certain types of cancer.

 

What types of recommendations are made when results are found?

The recommendations made depend on the specific DNA difference found. In some cases, there are prevention options. There may also be different treatment options should you develop a disease related to your DNA difference.

Some types of prevention include:

  • Annual screening for heart disease or cancer, including blood tests, imaging (MRI, EKG, ultrasound, etc), and physical examinations
  • Medications to prevent symptoms from developing, for example blood pressure medications
  • Preventative surgeries, for example removing breast tissue (mastectomy) to lower breast cancer risk in women found to have an elevated risk, or an implantable cardiac device before ever having a heart attack

If you have a result, we recommend you follow up with an appropriate clinic experienced in seeing patients with your genetic risk factor.

 

How will I receive my results?

If you decide to receive your results, and we find a DNA difference that increases your risk for a treatable or preventable health condition, a certified genetic counselor will contact you by phone to discuss your result. Genetic counselors have advanced training in medical genetics and counseling. The genetic counselor will help interpret your result and provide support and resources. The genetic counselor will review clinical guidelines and recommendations specific to your result. They will also let you know how to get care at Duke. You will receive a report that summarizes your result and recommendations for you and your family members.

 

What types of results will not be returned?

We will only return results for DNA differences that increase risk for preventable or treatable health conditions. This means you will not receive any results related to ancestry, ethnicity, non-treatable health conditions, or if you are an unaffected carrier.

This is a summary of what will happen in the OneDukeGen study. For more details and important information, please follow the consent document link in your MyChart message. You can decide whether or not to join the study after you look at the consent document.

 


Other relevant links

Duke Clinical & Translational Science Institute
Precision Genomics Collaboratory
Translating Duke Health

 


Have a question?

We are here to help!

Our Frequently Asked Questions page has definitions and other helpful information.

Email us anytime at OneDukeGen@duke.edu

Call us at 919-257-0752 during normal business hours (9am to 5pm Eastern)

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