Questions About Trials and Profiles
Choosing to participate in a clinical trial is an important personal decision. The following questions provide detailed information about participating in clinical trials. In addition, it is often helpful to talk to a physician, family members, or friends about deciding to join a trial. After identifying some trial options, the next step is to contact YCCI to find out more about what trials are occurring at Yale and to contact the study research staff and ask questions about specific trials.
- What is a clinical trial?
- What happens during a clinical trial?
- Where do the ideas for trials come from?
- Why should I participate in a trial?
- Who can participate in a trial?
- Do I have to have an illness to participate in a clinical trial?
- What are the benefits and risks of participating in a clinical trial?
- What are side effects and adverse reactions?
- What should I consider before participating in a trial?
- What should I do to prepare when meeting with the research coordinator or doctor?
- How is my safety protected?
- Who pays for clinical trials? Are there any costs to me?
- Should I continue to work with a primary health care provider while in a trial?
- Can I leave a clinical trial after it has begun?
Creating A Profile
- How do I create a profile?
To create a profile, click on the 'create a profile' link on any page of this website and fill out your information. When you click the submit button, your profile will be created.
- Will I be able to edit my profile once I create it?
Yes. You can edit your profile at any time by logging in to your profile and clicking on the 'Edit Your Profile' tab. Any changes you make will be updated in our system automatically.
- I forgot my password. How do I retrieve it?
To reset your password, click on the 'Lost Password' link on the login page of this website and enter your email address. A temporary password will be sent to you, which you will be required to change the next time you log in to the Clinical Research at Yale website.
- I would rather be contacted by phone than by email. Should I still create a profile?
Yes. Your profile includes an area where you can specify a preferred method of contact. You can choose between being contacted by phone or email. You can change your preferred method of contact anytime by clicking on the 'Edit Your Profile' tab of your profile.
- How do I temporarily stop being contacted about studies?
To temporarily stop being contacted about studies, log in to your profile, click the 'Edit Your Profile' tab and check the check box under 'Temporarily Opt Out.' You will be asked to specify a period of time during which you will not be contacted about any studies. At the end of that period, you will automatically be opted back in.
- Can I delete my profile?
Yes. To delete your profile, log in to your profile and click on the 'Edit Your Profile' tab. At the bottom of the page, you will see a 'delete your profile' link. Click on that link to delete your profile.
When you delete your profile, all of your personal information and any trials or trial categories you selected will be removed from the Yale Clinical Research website and the systems that support it. If you choose to create a profile again, you will need to re-enter all of your profile information.
How will my information be used? / How does the profile system work?
- When I express interest in a trial or trial category, how is my information used?
When you express interest in a specific study, the information from your profile will be sent to the doctor conducting that study. If you're eligible to participate, you may be contacted by a nurse or study coordinator. If you select a health category rather than a specific study, doctors who have active studies in that area may contact you to ask if you would like to participate. In both cases, you will be contacted by the preferred method (e-mail or phone) that you specified in your profile.
- What If I change my mind and decide I am not interested in participating in a study or study category in which I expressed interest?
You can change your study categories at any time by logging in to the profile system and clicking on the 'Edit Your Profile' tab of your profile. When you do, be sure to click the 'save' button at the bottom to save your preferences. To remove studies from your list of studies, click on the 'View My Studies' tab and click the remove button.
- Does adding a study to my list of studies guarantee that I will have the chance to participate?
Every trial has eligibility criteria that are used to make sure participants are suited to the study. We have provided a basic list of eligibility criteria, but there may be other factors to consider. The doctor, nurse, or study coordinator may ask you additional questions to make sure the study is right for you. Even if it's not, you may be eligible for other studies.
- How will you my address be used?
We may send you information about research findings, new studies, or other items related to clinical research at Yale. Your address is also provided to the doctor or study coordinator.
- Why does the profile registration page ask about my race? How will that information be used?
We ask about race or ethnicity because some trials are looking for specific characteristics in participants. This is because some conditions may be more common in those with a particular ethnic background or may affect them differently. Also, in order to receive funding from the federal government, we are required to make sure that research studies include a variety of groups, such as women and minorities, where appropriate.
- Who will contact me?
A member of the study coordination team will contact you.
- How long will it take for me to be contacted once I register?
Once you are registered, the ability to match to a trial is immediate. There is also the possibility that you will not qualify for any studies at this time. Therefore, a period of time may pass before you are matched to a trial and contacted by a member of a particular study team.
- Will I be required to participate in a trial if I am contacted? Can I change my mind?
Participating in a clinical trial is always your decision. You can change your mind about participating at any time. If you decide to withdraw in the middle of a trial, you should let the research team know about it and the reasons why, because it is important for them to know about any side effects you may have experienced. Also, it may be necessary to gradually stop taking any medications you have been given.
Questions about Privacy
- Who will be able to see my profile information? Will google be able to see my profile?
The Yale doctor and research staff affiliated with specific studies in which you expressed interest or those who are conducting studies in categories that interest you will be able to see your profile information. Just as when you visit your doctor, all health care providers and research staff at Yale are subject to HIPAA (Health Insurance Portability and Accountability Act) and are therefore required to protect the privacy and confidentiality of your information.
Internet search engines such as Google, Bing and Yahoo will not be able to see or index your information.
- How will my privacy be protected?
We will keep your information confidential and secure as required by state and federal law. We will keep the information that you provide indefinitely until and if you delete it. If you decide that you do not wish to participate in the database any more, you can delete your information any time by clicking the 'delete your profile' link at the bottom of the edit tab of your profile.
- What if I have additional questions?
Please feel free to ask about anything you don't understand and to consider participation in the research database and the consent form carefully - as long as you feel is necessary - before you make a decision. Questions about the database should be made to Kristin by calling 1-877-YSTUDIES (97883437).
If you have any questions concerning your rights as a research volunteer, you may contact the Human Investigation Committee at (203) 785-4688. If you have any questions about your privacy rights, please contact the Yale Privacy Officer at (203) 436-3650.
If you have any questions about participating in clinical trials, you may also wish to read our Clinical Trials FAQ.
How will my information be used?
When you express interest in a specific study, the information from your profile will be sent to the doctor conducting that study. If you're eligible to participate, you may be contacted by a nurse or study coordinator.
If you select a health category rather than a specific study, doctors who have active studies in that area may contact you to ask if you would like to participate.
In both cases, you will be contacted by the preferred method (email or phone) that you specified in your profile.