The SuperAgers Family Study benefits participants by allowing them to learn more about their own biology as well as the ways in which their genetic traits have sustained their exceptional longevity. Research from this study will inform new treatments and approaches to healthy aging for generations to come. Participants will also have the opportunity to receive information on their ancestry.
The SuperAgers Family Study aims to identify the inherited and natural factors that protect against human aging and related diseases. Our purpose is centered in uncovering ways to improve aging and protect against age-related diseases in humans. The data from this study will be used to create a large biorepository for future researchers about healthy aging.
The privacy of all SuperAgers Family Study participants’ samples and information will be ensured through the de-identification of data by use of unique, unnamed barcodes. Sequencing data along with linked phenotype data will be protected and maintained in a HIPAA-compliant data repository.
Yes! The SuperAgers Family Study is a communal effort and we welcome the broad participation. If you know other individuals aged 95 and over and their families, please encourage them to check eligibility here.
Research outcomes from the SuperAgers Family Study could help scientists understand why certain people live much longer and healthier than others. This study may also help us find better ways to prevent or treat age-related diseases.
The term "health research," sometimes also called "medical research" or "clinical research," refers to research that is conducted to learn more about human health. Health research also aims to find better ways to prevent and treat disease. Health research is an important way to help improve the care and treatment of people worldwide.
To maintain the integrity of this research study, you generally will not have access to your research-related personal health information. If you consented to receive ancestry results, those will be provided to you. Samples will be processed in groups rather than individually. This may take a considerable amount of time to receive your results and we cannot guarantee a specific timeframe for when they will be available. Please note that the overall study results will likely be disseminated publicly through research publications, in order to share our findings with the broader scientific community. To keep up to date on longevity research, you can sign up for the AFAR newsletter here.
Should you decide to participate in the SuperAgers Family Study, you will be asked to enter your health history, family history and social information in the Participant Portal. If you need help completing these tasks, you will be able to contact Research staff by telephone for support. Additionally, you will be asked to provide a saliva biospecimen. We will mail a biospecimen collection kit to you and you will collect your own sample. Simple instructions will be provided, and you will collect the sample without help from research staff. You may collect your sample by swabbing the inside of your cheek, or by filling a small tube with your saliva, choosing the method that is most comfortable for you.
Following sample collection, you will mail your biospecimen sample back to the study. Your sample will be processed and a report of your genetic makeup will be created. You will then have the option to share your electronic health records. This will give the researchers more details about your health history for more in-depth study.
Note: You do not have to share your electronic health records to take part in this study.
Participation in the SuperAgers Family Study is completely voluntary,and you are free to leave the study at any time without providing a reason. However, any information you may have already provided will not be removed from the study. The researchers and the sponsor may continue to use and share the information that was already collected.
To rescind your consent, you must contact the Principal Investigator, and theywill stop collecting new information about you. If you take back your consent and permission, you will not be allowed to continue to participate in this research study.
The multi-year SuperAgers Initiative is an ambitious effort led by the American Federation for Aging Research and Albert Einstein College of Medicine, in collaboration with Boston University School of Medicine. The Initiative coalition thanks our funder, James Fickel and the Fickel Family Foundation, for their generous support and contributions to this critical research in advancing exceptional longevity.
For additional questions about participation in the SuperAgers Family Study, please contact research staff at 718-839-7635, or email at firstname.lastname@example.org. If you have suggestions or concerns about your rights as a participant in the SuperAgers Family Study research, please contact staff in the Einstein Institutional Review Board (IRB) between the business hours of 9am and 5pm EST, Monday-Friday at 718-430-2253or email@example.com.