PSC Partners Patient Registry Participant Assent Form

Child Assent to Participate in the PSC Partners Patient Registry

This Assent form is for children and adolescents aged 7-17 who wish to participate in the PSC Partners patient registry.

Sponsor:                           PSC Partners Seeking a Cure (PSC Partners)

Title:                                  PSC Partners Patient Registry Informed Consent

Registry Coordinator/

Principal Investigator:     Rachel Gomel

Email Address:                This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Address:                          PSC Partners Seeking a Cure

                                          6900 E. Belleview Ave. Suite 202

                                          Greenwood Village, CO, 80111

                                     

You are being asked to be in this registry because you have primary sclerosing cholangitis (PSC). This form explains the registry. After reading this form, you can decide to be in the registry, or you can decide not to be in the registry. Either choice is OK. If you decide to be in the registry and then change your mind, you can stop being in the registry at any time.

Please ask the registry coordinator to explain anything you do not understand. They will answer all the questions you have. You can ask questions about the registry at any time.

If you want to talk to your doctor alone, please do so.

You may print a copy of this assent form to think about or talk about with family or friends before making your decision.

Will you participate in the PSC Partners Patient Registry? We are inviting you, other children and teenagers, to give information about yourself, how you feel about having PSC and how PSC bothers you, to help us learn more about PSC. We are also asking you to allow your doctor, your parent or guardian to give information about your disease to this registry. This will help doctors discover more about PSC and new ways to treat PSC.

To be a part of the PSC Partners patient registry, you and your parent (or legal guardian) need to read “Understanding Your Participation,” a form that tells you about the PSC Partners patient registry. You can ask questions and may contact the PSC Partners registry coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or call (303) 771-5227. To join the registry, your parent or your legal guardian must let you take part. 

If you decide to be in the registry, and later change your mind, you may stop at any time.

Do you need to be in the PSC Partners patient registry to benefit from research findings in the future?

No. You will benefit from new information even if you do not want to be in this registry.

What kinds of things will you do if you participate in the PSC Partners patient registry?

Your parent or guardian will help you fill out an on-line registration questionnaire. If you need help, you may contact the PSC Partners patient registry coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it  or by calling (303) 771-5227. Your parent or guardian may also ask your doctor to add medical information to the PSC registry.

When will my participation in PSC Partners patient registry end?

We will be using your information for many years to come.  We will be allow doctors studying PSC to use some of your information. You may choose to stop at any time.

Who will see this information?

Your information will be kept private and only be seen by you, your parent or guardian, PSC registry people and doctors studying PSC. If the information about the study is sent anywhere else, it will not have your name on it.