Penn State StudyFinder

Consent Form

WHAT IS THE PURPOSE?

The purpose of Penn State StudyFinder is to connect people who are interested in participating in research, referred to as participants, to Penn State or Penn State Health research studies.

If you are interested in participating in research, Penn State StudyFinder allows you to create your own account.

BASICS TO KNOW BEFORE USING PENN STATE STUDYFINDER

1. Enrolling in Penn State StudyFinder is voluntary. Choosing not to participate will not affect your care in any way.
2. At any time, you can deactivate your account to revoke all access to your information. (See “Account Deactivation” section for more details).
3. Your information in Penn State StudyFinder is confidential and protected.
4. There is no charge to you or your health insurance for participating in Penn State StudyFinder
5. There are no direct benefits to you for participating in Penn State StudyFinder.
6. Based on the information provided, you may be invited to participate in current and future research studies The corresponding research team will explain to you the risks and benefits of participating in their study before you decide whether to participate.
7. If you contact a study team to participate in research, there is no guarantee that you will be eligible. Some studies may require additional tests in order to determine eligibility.
8. Even if you express interest in a study, there is no obligation to participate.

WHAT WILL I NEED TO DO?

To connect participants to appropriate studies, Penn State StudyFinder captures information about both participants and research studies.

If you choose to enter your information in Penn State StudyFinder, we will ask you to provide:

1. Name
2. Demographics such as date of birth, gender identity, race
3. Contact Information
4. Areas of Interest

If you show interest in a specific study, you may need to answer additional questions.

INFORMATION ACCESS

All users of Penn State StudyFinder, with or without accounts, can access information about research studies that is posted in StudyFinder.

Access for Penn State to see your information is controlled by you and can be changed anytime in your profile.

There are two ways you can control access:

1. Profile Visibility: You can choose your information to be:
   1. Visible to all study teams.
   2. Visible to only study teams whose studies you show interest in.
2. Deactivate account: You can deactivate your account. Once deactivated, nobody can access your profile information. See “Account Deactivation” section for more details.

WHAT HAPPENS TO THE INFORMATION THAT IS COLLECTED?

1. If you receive information about a study that you are interested in, you may contact that study team to learn more information about eligibility.
2. By enrolling in Penn State StudyFinder, you are agreeing to receive periodic email notifications from Penn State StudyFinder.

By choosing “I Agree” at the end of this form, you agree to Penn State, Penn State Health, its agents and employees to share information you have shared to:

1. The team that maintains Penn State StudyFinder.

There are many reasons why information about you may be used or seen by Penn State or others (see below) while active in Penn State StudyFinder. Examples include:

• University, Food and Drug Administration (FDA), or other government officials may need the information to make sure that Penn State StudyFinder is maintained properly.

The information you enter into Penn State StudyFinder may be used for research purposes beyond recruitment efforts. Information about Penn State StudyFinder could be published in an article, but would never include any information that reveals your identity.

This authorization continues until you revoke it or deactivate your posting.

There is a risk of loss of confidentiality if your information or your identity is obtained by someone other than the investigators, but precautions will be taken to prevent this from happening. The confidentiality of your electronic data created by you or by the researchers will be maintained as required by applicable law and to the degree permitted by the technology used. Absolute confidentiality cannot be guaranteed.

ACCOUNT DEACTIVATION

Once you enter your information, authorized Penn State IT personnel can continue to view it until you choose to de-activate your information (see “Information Access” section above). You can deactivate your account at any time by logging into the system and choosing the option “Deactivate account.” If deactivated, no one will see your profile. Your record will remain stored, but it will never be displayed if it has been deactivated. Information that you disclose to researchers prior to deactivation cannot be protected from re-disclosure by Penn State StudyFinder. An example of this would be if you expressed interest in a study by reaching out to a study team, shared your contact information with that study and answered specific study questions. We cannot pull back the data you have already shared, but you will no longer receive information on other studies.

WHAT IF I HAVE QUESTIONS?

You have the right to ask any questions you may have about this research. If you have questions, complaints or concerns or believe you may have been harmed from participating in this research, you should contact Jennifer Kraschnewski at (717) 531-8161. If you have questions regarding your rights as a research subject or concerns regarding your privacy, you may contact the Penn State Human Research Protection Program at 814-865-1775. You may call this number to discuss any problems, concerns or questions; get information or offer input.

You do not have to participate in this research. Taking part in the research study is voluntary. Your decision to participate or to decline the research will not result in any penalty or loss of benefits to which you are entitled.