University of Kentucky Clinical Research Opportunities Wildcat Database (CROWD) Privacy Agreement:

Why Consider Participating in Clinical Research Studies?

If you decide to participate in a research study you will have regular interaction with research physicians and nurses who are at the leading edge of medical science and close medical monitoring of your condition. You may feel satisfaction from participating in studies that may contribute to new medical knowledge and that have the potential of helping others with similar illnesses. Most clinical research studies provide study-related procedures and treatments at no cost to the participant.

While there is no guarantee that you will benefit from participating in a clinical research study, it is important to consider both the potential benefits and any risks, and understand the commitments associated with participating in a clinical research study when making a decision. Some study treatments may not be approved by the Food and Drug Administration (FDA) or may not be approved by the FDA for the use being studied; these are called off-label research treatments.

Who Can Join this CROWD Database?

Anyone who lives in the United States can join the UK CROWD Database. You do not have to be diagnosed with a health condition to be a research participant. If you decide to join, you will be asked if you are completing this CROWD form for yourself or a dependent. A parent, legal guardian or caretaker may complete this CROWD form for a dependent under the age of 18 or a dependent adult that may not be able to enter in their own information. You do not need to create an account for yourself to enter a dependent. NOTE: Once minor dependents reach age 18, they will be offered an opportunity to establish an independent account to continue their own CROWD Database profile.

Joining the CROWD database is easy and should take less than 10 minutes. If you decide to sign up, you will be asked a few questions about yourself, such as your age, date of birth and contact information. All of this information will be stored securely and will be kept confidential as described below.

As you join, you will create a unique username and password that will give you access to the CROWD Database profile. Do not share your username and password with anyone else. You may change your username and password at any time or if you have forgotten your password. Contact the UK Clinical Services Core (CSC) at either (859) 323-8150 or (859) 257-7856; you can also email us at UKclinicalresearch@uky.edu immediately regarding any unauthorized use of your username and password or any other security concerns. All participants may receive a courtesy message from UK CSC Database Manager to confirm that they still wish to be in the database and remind you that you can update your profile at any time.

CROWD Database Privacy Agreement:

The University of Kentucky respects your privacy and takes privacy very seriously. Your personal information will be contained in the CROWD Database a secure password protected system here at the University of Kentucky and will never be sold, rented or leased to any other organization. Private health information contained in the UK CROWD Database will only be released to researchers investigators employed by the University of Kentucky.

By agreeing to this CROWD Database Privacy Agreement, you consent to the use and disclosure of your personally identifiable information in your database, as outlined here and in the UK CROWD Privacy Agreement. You also agree that University of Kentucky Clinical Services Core (CSC) database manager may access, keep or share your registration information if required to do so by law or in the good faith that it is necessary to:

  • Enforce the terms of this CROWD Privacy Agreement;
  • Respond to your requests for customer service; and
  • Comply with federal, state or local legal process.

By completing the registration process, you represent and warrant that you reside in the United States, are at least eighteen years of age, and that you possess the legal right and ability to enter into this CROWD Database Privacy Agreement. You agree that if you join the UK CROWD Database, that you will provide accurate information about yourself. You agree that if any information you provide is inaccurate, UK CSC may prohibit your access to join the CROWD Database. If you enter someone who may not be able to register themselves (including individuals under the age of 18 or someone who is unable to join without your assistance), you assert that you are their legal guardian, parent or caretaker and agree to the terms outlined in this agreement. The CSC database manager will contact all participants annually as a reminder to update your information.

If you agree, your profile will be added to the UK CROWD Database as soon as you complete and submit your information.


Thank you for learning more about UK CROWD Database!

Questions or concerns?
For general questions, please email UKclinicalresearch@uky.edu or visit the
UK Clinical Research Participant Contact page http://ccts.uky.edu/ukclinicalresearch/PR_index.aspx.

If you have questions about your rights as a research study participant, you may call the University Of Kentucky Office Of Research Integrity at (859) 257-9428 or toll free at 1-866-400-9428.

 

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