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Study #20-01006, Version: October 8, 2020

Key Information

You are invited to take part in a research registry that will be used to recruit subjects for other research studies. Your participation is voluntary. This registry is open to anyone interested in participating in research studies and involves the collection and storage of information about you. There is a risk that unauthorized individuals or entities may receive your information. There is a potential benefit of more easily being informed about studies that may be of interest to you.

What is the purpose of this registry?

NYU Langone Health created this research recruitment registry to collect and maintain information about individuals interested in participating in research. If you choose to participate, this registry will collect and maintain information about you that you share with us. We will use the information you provide to help determine whether you are eligible for other research studies at NYU Langone Health.

Who is eligible to participate?

This volunteer registry is open to anyone interested in participating in clinical studies. Volunteers of any age are welcome, but only adults can create accounts.

What does participation involve?

Once you indicate below that you agree to be part of this registry, you will be asked to answer questions about your demographics (age, race, gender, etc.) and medical history. You can access your profile whenever you like to update the information you provide.

How will my information be used?

NYU Langone Health researchers interested in using this volunteer registry to recruit for their studies will approach us with specific study criteria. We will then identify any volunteers whose profiles match these criteria and share their contact information with the researchers. The researchers will then contact those individuals to see if they are interested in participation in the research study and further verify eligibility.

The information you provide for the registry will be kept indefinitely for the purposes described above. Additionally, the information provided could be used for future research studies or distributed to another investigator for future research studies without additional informed consent after the identifiers are removed.

What are the possible risks of being part of this registry?

Maintaining the safety and security of your information is our priority and efforts will be made to keep your information confidential, but we cannot make a guarantee against potential breaches of electronic information.

What are the possible benefits of being part of this registry?

The registry will help us decide whether to contact you about studies that may be of interest to you. You may potentially benefit as this may reduce the time and effort you spend looking for research studies at NYULH. Please note that you might not receive a benefit from participation. It is possible that there may not be a research study available at the NYU Langone Health that you will be eligible for, or there may not be a study that you are interested in participating in. There will be no immediate medical action or follow-up to any reported issues based on the information shared during signing up for this registry.

Can I change my mind and end my participation in this registry?

Your participation in the registry is voluntary and you may choose not to participate, or to leave at any time. Leaving the registry will not interfere with your future care, payment for your health care or your eligibility for health care benefits.

If you decide you are no longer interested in being contacted for future studies, you may withdraw your participation at any time by any of the following means:

  • Call 646-754-7432

  • Email iConnect@nyulangone.org

  • Utilize the opt out feature in your iConnect account

If you choose to withdraw your participation, you will be removed from the pool of people whom we may contact. However, you may still be contacted by study teams who received your contact information prior to your withdrawal.

Will I be paid for participating?

There is no compensation for signing up for the registry. However, compensation may be available in some of the studies that you may be contacted about. This information will be provided to you when you are contacted about additional studies.

HIPAA Authorization:

Federal law requires us, and our affiliated researchers, health care providers, and physician network to protect the privacy of information that identifies you and relates to your past, present, and future physical and mental health conditions. We are asking for your permission (authorization) to use and share your health information with others in connection with this study.

What information may be used or shared with others in connection with this study?

All information in your volunteer registry profile may be used and shared with those individuals listed in this section:

  • The registry team, including the Principal Investigator, and study coordinators

  • NYU Langone Health personnel responsible for the support, maintenance, and oversight of the registry

  • Governmental agencies responsible for research oversight

  • NYU Langone Health researchers recruiting from this registry

How long may my information be used or shared?

Your permission to use or share your personal health information for this study will never expire unless you withdraw it.

Who should I contact with questions?

If you have questions, concerns or complaints regarding your participation in this research study or if you have any questions about your rights as a research subject, you should contact the study team at 646-754-7432 or iConnect@nyulangone.org. If a member of the research team cannot be reached or you want to talk to someone other than those working on the study, you may contact the Institutional Review Board (IRB) at (212) 263-4110.

After reading this information, are you willing to sign up for this registry?