Registration & Consent
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Definitions:

  • You/Your/Me/My/I - the person who creates the account and answers the questions in the profile; the account holder (or the registrant)
  • Participant - the patient; the person whose health information is entered into the registry
  • The Registry – The International Cholangiocarcinoma Patient Registry (ICPR)
  • Profile – Your specific account information given during registration and consent (username, password & personal health information including the survey questions stored in the ICPR)
  • Survey – the specific health questions asked in the ICPR
     

The registration process is simple and consists of three steps:

Step 1: Creation of your account

You may create an account if you are:

  • an adult (age 18 or older) diagnosed with cholangiocarcinoma, OR
  • the patient’s parent, grandparent, brother or sister, child, spouse, or legal guardian, OR
  • the parent or legal guardian of a minor or dependent with cholangiocarcinoma, OR
  • the parent, grandparent, brother or sister, child, spouse, or legal guardian of a patient who has died from cholangiocarcinoma.

The registration process 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. The answers to the survey questions may be changed at any time by logging into your account.
 

 
Your First Name:
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Your Last Name:
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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

 

Step 2: Informed Consent

I understand that:

  • By creating an account and completing a profile, I have consented to participate in the ICPR;
  • Private information about the participant, and the participant’s health will be stored in a secure database using de-identified (coded and anonymous) information so others will not know who the participant is;
  • The ICPR may share de-identified (coded and anonymous) information about the participant’s health with other participants in the registry, doctors, researchers, scientists, clinicians, pharmaceutical companies and other registries or databases, but the ICPR Registry will never give out or sell personal information, such as the participant’s name, phone number, email or other contact information, unless receiving written permission first;
  • Participation is voluntary and the participant may withdraw from the ICPR at any time without having to provide any explanation;
  • The ICPR will contact me upon occasion for the following reasons:
  • to ask that I update my patient profile (every 6-12 months)
  • to provide me with information about research opportunities, clinical trials or studies relevant to the participant
  • to provide me with the results of research using information from the registry
  • if information in my profile is incomplete or has been incorrectly entered
  • to ask additional survey questions, if needed.
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Yes

 

Step 3: Complete the profile

After creating an account and answering the consent questions on this page, you will be taken to a new page.  First, enter the name and information for the person with the diagnosis (participant). Next, complete the survey questions about the participant's diagnosis, medical history, etc. Once completed, you will be able to add other affected family members and complete a survey for each one. You can log out at any time and your answers will be saved. You can login later to complete or change your answers.

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I agree to the terms and conditions

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