How often will I be contacted if I decide to join the Twin Registry?
The volume of information that you receive from the Twin Registry can vary greatly from year to year. Twin Registry members are sent birthday cards via email, as well as a newsletter with information about current studies, the progress of the Twin Registry, and other information of interest to twins. The frequency with which you will be invited to participate in studies will depend on the nature of the studies in progress at any given time, and on whether you are a good fit for those studies. Several new studies usually begin each year.
Participation in the Twin Registry and in specific studies is completely voluntary. You may decline to participate in any study or ask to be removed from the Twin Registry at any time.
As a member of the Washington State Twin Registry, you may receive an invitation to participate in one of our research studies. To learn about how we decide which twins to invite to participate in a study, click here. Study invitations are sent by email and/or letter. Here is how to identify these invitations and how to respond when you receive one.
Invitations sent by email
The Twin Registry is going green! We use email correspondence as much as possible and usually send study invitations by email. A great way to identify study invitation emails is to look at the email subject lines. While the subject line might vary from study to study, you can always identify an invitation by looking for key words such as:
- WS Twin Registry Study Invitation!
- Study Eligibility Survey!
- New Twin Registry Study!
- <Study Name> Study Invitation!
Another way to identify study invitation emails is to check your inbox for email addresses that end in @wsu.edu. You will typically see study invitations from our Twin Registry email account email@example.com. Some email accounts are set up to filter emails so that unrecognized emails are sent to the junk mail folder. If you have one of these filters, be sure to add our email address to ensure that you receive our study invitations and other Twin Registry information!
Invitations sent by letter
Studies may also send you a letter. A study invitation letter may look very similar to your original Twin Registry Enrollment Invitation letter, but they are different! Look for the return address to be the Washington State Twin Registry and look for our logo.
Study invitation information
Whether sent by email or letter, each study invitation will tell you about:
- The goal of the study
- The tasks involved
- How you can let us know whether you are interested in participating. You may be asked to either:
- Complete an eligibility survey (explained below) and a study coordinator will contact you if you are a good fit for the study.
- Contact the study coordinator directly to answer “yes” or “no” about your interest in the study.
Tip: Help us by answering either “yes” or “no” to study invitations. If you are interested, we would love to hear from you. If you are not interested, it is equally helpful to tell our study coordinators. A quick email or phone call is much appreciated!
Eligibility surveys are a quick way for you to respond to study invitations, whether it is “Yes, I am interested!” or “No thank you.”
Clicking on the link, or typing the link into the address bar of your internet browser, will bring you to an online questionnaire. First you will be asked whether you are interested. If you are interested, there will be some questions to help us determine if you are a good fit for the study. We may also ask you to provide your current contact information to help keep our records up to date.
After you submit your eligibility survey, the study coordinator will review your answers. If you might be eligible, the coordinator will get in touch with you to talk more about the study.
If you have questions or want more information at any time, however, feel free to contact the study coordinator using the phone number or email address provided in the invitation.
Keep your contact information up to date!
In order to receive these study invitations, please be sure that we have your current contact information. If your name, phone number, mailing address, or email address have recently changed, please update your information by sending an email to firstname.lastname@example.org or by calling us at 1-888-223-0868.
When you joined the Twin Registry you filled out the Enrollment Survey, which contains questions about demographics, health and behavior. We use the information you provided in this survey to help us make an initial recruitment list for each study.
The design of most studies requires participation by twin pairs who have specific characteristics. These may be as simple as age, sex, or geographic location. Or they may be medical conditions like pain in a certain area of the body, or behaviors such as smoking. We asked you about many of these characteristics on the Enrollment Survey. When we have a request from a researcher for participants with specific characteristics, we query our database to find twin pairs with those characteristics. If you and your twin do not have the specific characteristics for a study, your names will not be on the recruitment list used by the coordinator for that study. That is how we use data to determine which twin pairs should be contacted and asked if they are interested in each study.
Once we receive a recruitment list of eligible twin pairs for a study, we send letters and/or emails to randomly selected batches of these twins. This ensures that recruitment remains a random sample of eligible members of the twin registry.
If you are contacted and are interested in the study, the study coordinator will call you to describe the study and to ask you additional questions to see if you are a good fit for the study. Most studies have exclusions, which are things that could prevent a person from participating in that study. For example, you may not be a good fit for a study about pain if you are taking certain medications that decrease pain, because you might not respond to the pain tests. You may not be a good fit for a study that includes MRI scans if you have a pacemaker or other metal in your body, because it might not be safe for you to have the MRI scan, or the metal may interfere with obtaining images. To learn if any of the exclusions apply to you, we ask you a series of screening questions on the phone. This is why you might be told, after you have been screened by the coordinator, that unfortunately you are not a good fit for a particular study.
In addition, most studies have recruitment goals. For example, a study might need to see 10 female MZ twin pairs with a certain condition. If we have already seen 10 MZ twin pairs and you and your twin are the 11th MZ twin pair with that condition that we have recruited, we might not need you at that time, even though you have met all the criteria for participation. However, sometimes recruitment goals change, and even the specific characteristics and exclusions can change as the study progresses. So it is possible that you might not be a good fit at first, but you could be recontacted and re-screened at a later time.
There will be many new studies in the future. If you haven’t been contacted yet, or if you have been told you are not a good fit for a study, there will be opportunities to participate in future studies. We greatly appreciate your interest in participating in our studies. Scientific research using twin data is very valuable. We could not do the important work we do without the help of Twin Registry members like you!