Questions

• Am I going to see my results?
• How long does it take to participate?
• How do I participate from out-of-state?
• Do I have to pay to participate?
• How do I benefit from participating?
• How will you know anything about my health in the future?
• Who is involved in this research?
• How is my information kept private? Will my doctor need to know I participated?
• How can I keep informed about the progress of the study?
• Can I change my mind about participating?
• How can I tell my family and friends to participate?

Responses

Am I going to see my results?

Each individual will not see their results. The volume of subjects in the study, issues of confidentiality and the sheer cost and time intensity of DNA sequencing prohibit us from releasing individuals’ results.

However, the purpose of this study is to gain insight into the genetics involved in healthy longevity and when we do make a discovery, we plan to update study participants on the general findings and include information about where any results have been published.

How long does it take to participate?

Participation generally takes 30-45 minutes, only one time. We need to obtain some information from you about your health and family history and also draw a blood sample of approximately 3 tablespoons.

Some people will participate locally where this can occur in one visit. Others may live in other parts of Southern California and part of the process may occur over the phone and part will be a visit from the nurse. Others will participate from other parts of the country; these individuals will participate through a phone call and by mail.

There is no follow-up required in this study.

How do I participate from out-of-state?

The process of participating from another state is fairly simple. Once we have established your eligibility, we can set up a time for a phone call appointment.

In the interim we will mail you a packet that contains the consent form, the saliva collection cup and instructions for participating. We ask that you do not sign anything or collect your saliva until we call and have our phone “interview,” at which point we will walk you through the entire process. Once you have completed this phone call you simply mail back the Consent form and saliva specimen in a pre-paid mailer to our research institute.

Do I have to pay to participate?

No, you do not. If you participate by coming to Scripps Green Hospital, we will validate your parking so that you can park for free. We also cover all the costs of the blood draw. If you are out-of-state, we cover the costs for shipping through the USPS.

How do I benefit from participating?

We are not able to pay you for being a part of the study. We consider you a volunteer and your participation will be valued as a contribution toward research and the future of science and medicine. We appreciate your participation, but unfortunately there is no direct benefit for you.

How will you know anything about my health in the future?

We consider you to be unique and to have ‘secrets’ hiding in your DNA. Therefore, once we have a sample of your DNA, we have what we need to work with. No matter what the future holds, you have lived past 80 years in good health and that means there is something special about you that we hope to uncover in research.

What we learn about healthy longevity among the Wellderly population can contribute to future research and possibly lead to disease prevention for future generations.

Who is involved in this research?

The study is taking place only here at Scripps. This is a combination of Scripps Genomic Medicine and the Scripps Translational Science Institute (STSI). All of the samples that are collected will be analyzed here at the Scripps Translational Science Institute.

The only current collaboration is with the J. Craig Venter Research Institute in Maryland, which is specifically a scientific collaboration. Any current or future collaboration will not affect your personal identifying information that will continue to be kept private and confidential here at Scripps Genomic Medicine.

How is my information kept private? Will my doctor need to know I participated?

Your privacy is very important to us. In the research your sample will be labeled as a barcode and number, and therefore will be de-identified to the scientists. This is meant to keep the scientists blinded and free of any bias, as well as to protect your privacy.

Any information you share with the nurse is kept in a secure, locked database kept separate from the hospital records. Therefore, your information is kept confidential and there is very limited access to it by only the clinical research team, which is a very small group of people.

You can decide whether or not to share any information with your doctor about your participation in a research study. The fact that you participated is again kept confidential and will not be in your medical record unless you request your doctor to make a note of it in your chart.

How can I keep informed about the progress of the study?

We would love for you to know the latest progress and we will be updating the information online regarding media, articles and the number of people enrolled as often as possible. You can also contact us with any questions at any time by calling 1-800-SCRIPPS (1-800-727-4777) or e-mailing wellderly@scrippshealth.org.

Can I change my mind about participating?

Yes. We consider you a volunteer in the study and you can indeed call to request to have your DNA sample destroyed. We would have you put your request in writing and mail it to us.

We would not be able to erase the work that had been done with your sample up to that point, but your sample would be destroyed and not used from that point on. If you are a Scripps patient, your withdrawal from the study would not in any way impact your care at Scripps.

How can I tell my family and friends to participate?

If you would like to have fliers or cards to give to family or friends, you can contact the study coordinator by emailing wellderly@scrippshealth.org, and make a request. We have postcards and fliers that available for you to share with people you think would be interested.

Your friends and family can also call 1-800-SCRIPPS (1-800-727-4777) and ask about the Wellderly study. Or if you have a direct contact with the nurse coordinator, please feel free to give them that phone number.

You can also forward a link to our Web site if you would like someone to see our information over the internet. The link is http://www.scripps.org/wellderly.