Registration

The registration process is simple and consists of two steps:

Creating your account:

An account can be created by an adult with the diagnosis of primary sclerosing cholangitis (PSC), the parent or legal guardian of a minor or legally authorized representative of an adult patient with the diagnosis, or the caregiver of a deceased PSC patient. For the registration, we will ask a series of questions to confirm your participation and will ask for the name of the account holder. The account holder will create a username and password for the account which are needed to log into the account in the future. The answers to the communication questions may be changed at any time in the future by logging into your account.

Completing the profile:

After creating an account, you can complete the profile. First, enter the name and information for the person with the diagnosis (participant). Next, complete the survey about the participant’s diagnosis, medical history, etc. Once completed, the account holder will be able to add other family members with PSC and complete a survey for each one. You can log out at any time and your answers will be saved. You can log in later to complete your answers.

Please note that you do not have to answer all the questions. "Unknown" means you do not know the answer.

You may find the wording or content of some survey questions not applicable to you. If you are unsure about how to respond to a question, please contact, This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Informed Consent

For the purpose of this document “I” and “you” refer to the registrant, either the individual affected by primary sclerosing cholangitis (PSC) or the parent, guardian or family member providing the information on behalf of the affected individual (the person legally responsible for the care of the affected individual).  “The registry” refers to the PSC Partners Seeking a Cure patient registry.
 
All of the following questions must be answered in order to participate in the registry.
  1. The registry has been fully explained to me. I have read and understand the “Understanding my Participation” form and this “Informed Consent Form”. I also know how to access both documents in the future if I want to review them. I have had the opportunity to ask questions of the Registry Coordinator.
    All my questions have been answered to my satisfaction.
    * This Field is required
    Yes

  2. I understand that my participation in the registry is entirely voluntary. Should I change my mind and wish to withdraw my data from the registry, I understand that I will be free to do so without having to provide any explanation.
    * This Field is required
    Yes

  3. Your information will be saved in the registry using a code. The code is used so others don’t know who you are. The registry has processes in place to protect your identity. The registry may share your coded de-identified information with other registries or databases, including the Global Rare Disease Patient Registry and Data Repository (GRDR). This information may be used for research or to plan clinical trials.
    I give permission for my de-identified information to be shared with other approved registries and databases.
    * This Field is required
    Yes

  4. If researchers learn anything notable about my condition, I would like to be contacted with this information.
    * This Field is required
    Yes

  5. The registry may get information about a clinical trial for which I might be eligible. I would like to be contacted with this information.
    (Please note that even if the coordinators of a clinical trial believe that you might be eligible for the trial, based on the data about you stored in the registry, it is still possible that later on it will turn out that you do not meet the trial inclusion criteria after all. Please also be aware that if we inform you about the existence of a trial, this does not imply that we endorse it. In order to participate in any trial, you will need to fill out a separate informed consent form.)
    * This Field is required

  6. It is important that the registry information be up to date. We will contact you once or twice a year to ask about changes in your medical condition. We may also send you electronic forms to fill out each year. I give the PSC Partners Patient Registry permission to contact me with this information.
    * This Field is required

  7. The participant is 18 years or older.
    * This Field is required

  8. Please choose the CONSENT option that applies to you:

    * This Field is required

  9. Please choose the ASSENT option that applies to the person with PSC:

    If the participant with PSC is between the ages of 7-17, he or she needs to read/understand the Participation Assent Form and to agree to participate in the PSC Partners registry.
    * This Field is required

    Name of child:
    Name of parent or legal guardian:

  10. Consent: By checking this box, I (the patient, caregiver, legally authorized representative for an adult patient and/or legal guardian for a pediatric patient) am indicating that I have read Understanding Your Participation and the Consent Form for the PSC Partners patient registry, that I understand the risks and benefits of participation, and that I agree to participate in the registry.
    * This Field is required
    Yes

Your First Name:
* This Field is required
Your Last Name:
* This Field is required
Your Relationship to Participant:
* This Field is required Information for: Your Relationship to Participant : <p>
	Please tell us how you are related to the participant.</p>
E-mail / Re-enter email:
* This Field is required Information for: Email : Please enter a valid e-mail address. A confirmation email will be sent to this address upon registration. * This Field is required Information for: Verify Email : Please enter a valid e-mail address. A confirmation email will be sent to this address upon registration.
Username:
* This Field is required Information for: Username : Please enter a valid username.  No spaces, at least 3 characters and contain 0-9,a-z,A-Z
Password / Re-enter password:
* This Field is required Information for: Password : Please enter a valid password.  No spaces, at least 8 characters and contain lower and upper-case letters, numbers and special signs * This Field is required Information for: Verify Password : Please enter a valid password.  No spaces, at least 8 characters and contain lower and upper-case letters, numbers and special signs

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