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Twin Research Registry at SRI International
NOTE: please only click the submit button once. Please be assured that your form was submitted. You will hear from us soon. If you do not, please contact twin [at] sri.com
You are invited to join the Twin Research Registry at SRI International.
What is a Registry? A registry is a research database that contains a list of potential research participants. If you agree to join, this means that information you provide may be used to inform you about potential studies that you may be interested in joining.
Duration: Your participation in the Twin Research Registry will continue indefinitely and will not extend beyond the database. Any future studies we inform you of will have their own research protocols that you would have to consent to separately. This means that while you can choose to be in this Registry, any actual research study you may participate in is entirely outside of this Registry and you can choose to quit either or both at any time.
If you decide to join, your active participation will total approximately 5-10 minutes to complete a short registration form. This form will ask about your and your twin’s gender, whether you are fraternal or identical twins, how close you feel, how far in miles you live, how frequently you get together, your contact information, your date of birth, ethnicity, marital status, education, and some questions about smoking.
PURPOSE OF THE TWIN RESEARCH REGISTRY The Twin Research Registry (TRR) was created in 1995 as a resource for scientists seeking to study the genetic contributions to a variety of medical and behavioral conditions. The TRR is always seeking twins or multiples of any age. Although twins from all over the world may join, most of our research studies to date have involved participation in the San Francisco Bay Area.
VOLUNTARY PARTICIPATION You do not have to join the TRR if you do not want to, and if you decide to join and later change your mind you may un-enroll at any time without any penalty or loss of any benefits to which you may be entitled. Should you decide to un-enroll, your information will be removed from the database.
PROCEDURES If you choose to join, the Twin Research Registry study staff will add your name and contact information to our database. You will be sent birthday cards, an annual newsletter, and have the opportunity to be contacted about any research studies that are seeking to enroll twins of your age and twin type (fraternal or identical).
There are two ways to be informed about future research: (1) We can provide you with information so that you can personally reach out to the researchers to learn more about their studies, or (2) we will call you to let you know about specific research opportunities as they become available.
You are under no obligation to participate in any research studies that do not interest you.
POSSIBLE RISKS, DISCOMFORTS, AND INCONVENIENCES There are risks, discomforts, and inconveniences associated with any research study. These deserve careful thought. There is a risk that your name and contact information will be discovered if there is ever an unauthorized access to the database. Many steps are taken to ensure this never happens (see Confidentiality below). When contacted by the Twin Research Registry staff regarding any research opportunities, you should let them know if you have any questions.
POTENTIAL BENEFITS Being a member of the Twin Research Registry provides you the opportunity to participate in future research studies. These studies will each have their own potential risks and benefits.
The annual newsletters may provide you with interesting twin-related information.
We cannot and do not guarantee or promise that you will receive any benefits from being a member of the Twin Research Registry.
PARTICIPANT’S RIGHTS You should not feel obligated to agree to join the Twin Research Registry. Your questions should be answered clearly and to your satisfaction. If you decide not to join, simply do not complete this form or hit “submit”.
CONFIDENTIALITY All data will be kept in secured files on the SRI campus which is access-controlled. SRI computer systems are behind a monitored firewall using state-of-the-art security procedures. Your name will not be used by anyone other than authorized personnel, unless you specifically give us permission to do so, such as in our annual newsletters. Any report of the data collected will be in summary form, not identifying individuals.
FINANCIAL CONSIDERATIONS SRI International is providing financial support for the Twin Research Registry.
Payment You will not be paid to join the Twin Research Registry. Many of the research studies that twins may participate in offer compensation however.
Costs There is no cost to you to join the Twin Research Registry.
CONTACT INFORMATION (for Questions, Concerns, or Complaints)
If you have questions about the Twin Research Registry, please contact us at twin [at] sri.com. You may also call us at 1-800-SRI-TWIN.
Independent Contact: If you are not satisfied with how the Twin Research Registry is being conducted, or if you have any concerns, complaints, or general questions about the Registry or your rights as a member, please contact the Institutional Review Board at SRI International by calling 650-859-4022 or e-mailing IRB [at] SRI.com.
By continuing, you agree to be in the Twin Research Registry. Please note that you do not have to answer any of the questions below, however if you want to be registered in the Twin Research Registry, you will need to answer the questions that are marked with an asterisk (*).