Frequently Asked Questions about the PAtwin Registry
What is the registry?
The PATwin Registry is simply a list of multiple-birth families in the state of Pennsylvania who have consented to be contacted for research projects. Each family is asked to answer a few questions about the types of studies they may be willing to participate in, and respond to a limited set of questions about the family’s twins. They will also be asked to provide basic demographic and contact information.
Why is the registry important?
Pennsylvania has large cities and small towns. Growing up in these different contexts can bring different sets of advantages and challenges. Because twins raised in the same families share many social experiences, they present a great opportunity to study how such social experiences shape individuals as they develop across time. By providing researchers with a list of parents with multiple-birth siblings who have indicated they are open to being contacted about potential participation in research projects, the registry will allow researchers to plan and carry out projects that would not otherwise be possible.
Who has access to the PAtwins Registry information?
All the information in the PAtwins database is confidential. Only researchers who have received approval from the Penn State Office of Regulatory Compliance will be allowed access information from the database. Your information will not be sold or given to any other organization.
How long will my name be in the database?
You and your children will be listed in until you ask to be removed. All requests to be removed from the database will be honored.
How do I update my information?
To change information in the database, or to be removed, click the "Contact Us" link on this website or email: PAtwins@psu.edu. Please provide your name, address and phone number, plus the names of your.
How did you find me (and my twins)?
Several methods are used to contact parents of multiple birth siblings. One method is sending out letters from the Department of Health’s Bureau of Family Health. These letters are sent out from the Department’s offices to avoid their releasing names of state residents without the residents’ consent. Following this protocol, researchers do not have access to any names or other identifying information unless parents or siblings (in the case of twins older than 18) contact us by sending in their enrollment forms. Another method is asking school administrators (e.g., principals) to pass along packets with enrollment information.
Will I get paid to participate in research?
Some research programs offer money to participants, but some do not. If the research project includes an on-site visit, other forms of compensation may include physical and developmental evaluation of your child, or free or reduced cost therapy. Additionally, many families find that participating in research is interesting as it gives insight into their children's development, and provides a sense of satisfaction for having contributed to important advances in knowledge.
How much time is involved in participating in research?
The time involved varies greatly depending on the individual research project. It varies from a single meeting, lasting less than one hour, to several meetings over several years. In some cases, research projects may use online data collection protocols that take a few minutes a day over a week or more. The time commitment is always clearly outlined before you agree to participate, and the compensation should match the commitment. Your participation is always voluntary. You may stop at any time.
When will I be called and how often?
When you will be contacted depends on which research projects are currently recruiting subjects. Depending on the ages of children being recruited, it could be a week after you sign up to several months; it is also possible that you may never be contacted. We try very hard not to overburden parents by calling too often. When you are contacted, you will be given the option to not be called for a period of time of your choosing.
Am I committed to participating in any specific research project?
No, you are not committed to participate in any research project and may say “no” to any research request. Your willingness to be in the database means that you are available to be asked about participating in future research. Which research projects, and how many you agree to participate in are entirely up to you.
How do I know that participation in research will be safe?
All research projects are reviewed by the University Institutional Review Board to make certain that they meet legal and ethical guidelines, which include the safety and wellbeing of research subjects.
My friend or neighbor has twins. How can I get them signed up?
We hope that you talk to your friends and neighbors about the PAtwin Registry. If any of them have twins, we invite you to encourage them to enroll. Doing so is easy through the site. However, in the case of minor twins younger than 18 years of age, only their parents or legal guardians can sign them up.