Registration and Consent

The registration process is simple and consists of two steps:

Creation of your account

You may create an account if you are:
  • a patient age 18 or older who can understand the consent form (and who does not have a legal guardian) diagnosed with lymphangiomatosis, Gorham’s disease, or one of the other diagnoses listed here, OR
  • the patient’s parent, grandparent, brother or sister, child, spouse, or legal guardian, OR
  • the parent, grandparent, brother or sister, child, spouse, or legal guardian of a patient who has died

Definitions

  • You/Your/Me/My/I - the person who creates the account and answers the questions in the profile; the account holder
  • Participant - the patient; the person whose health information is entered into the profile
  • The Registry - International LGDA Registry for Lymphatic Malformations

Your participation will involve

  • Creation of an online account;
  • Completion of a profile with information about the participant, his/her diagnosis, treatment, and medical history; and
  • Occasionally updating the participant’s profile as information about him/her changes.

Complete the profile

After creating an account and answering the consent questions on this page, you will be taken to a new page where you can complete the participant profile. Once there, you will enter the name and some basic information about the participant (the person with the diagnosis). This information is never shared with researchers; it is used only for authorized Registry staff to contact you. Next, you will complete the survey about the participant, his or her diagnosis, and medical history. The first page of the survey consists of the instructions; you may print this page and there is a link to the detailed survey instructions located at the top of each page of the survey. Once completed, the account holder will be able to add information about the participant's doctors and upload results of medical testing. You can log out at any time and your answers will be saved. You can login later to complete your answers.

Create Your Account:

Write down your username and password and store them in a safe place. You will need these to log into your account in the future.

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 : Please tell us how you are related to the participant.
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 : <p>
	Your password is cAsE SeNsiTiVe. Eight-character minimum. No spaces. Must include one of each: a number, a special character, and an upper and lowercase letter.</p>
Password / Re-enter password:
* This Field is required Information for: Password : <p>
	Your password is case sensitive. Eight-character minimum. No spaces. Must include one of each: a number, a special character, and an upper and lower case letter.</p> * This Field is required Information for: Verify Password : <p>
	Your password is case sensitive. Eight-character minimum. No spaces. Must include one of each: a number, a special character, and an upper and lower case letter.</p>

 

Informed Consent

I understand that

  • Creating an account and completing a profile assumes that I have consented to participate in The Registry;
  • Private information about me, the participant, and the participant’s health will be stored in a secure database using a code so others don’t know who I am or who the participant is;
  • The Registry will never share my or the participant’s private information with other people;
  • The Registry may share the information about the participant’s condition with other people in the registry, other doctors and researchers, and other registry databases, but The Registry will never give out any personal information, such as my or the participant’s name, phone number, email or other contact information;
  • Participation is voluntary and I may withdraw from The Registry at any time without having to provide any explanation;
  • The Registry will contact me occasionally to ask that I update the profile and to provide me with information about research opportunities relevant to the participant.
* This Field is required
Yes

If the participant is between the ages of 7 and 17 inclusive (or below the age of adulthood according to local law) they need to read the Participation Assent Form and agree to participate in The Registry.

* This Field is required

The Registry has been fully explained to me. I understand the “Understanding Your Participation” and informed consent form. I also know how to access this document in the future if I want to review it. I have had the opportunity to ask questions of The Registry Coordinator. All my questions have been answered to my satisfaction. 

I understand the risks and benefits of participation and I agree to participate in The Registry.

* This Field is required
Yes

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