Registration

The registration process is simple and consists of two steps:

Creation of your account

An account can be created by an adult with a diagnosis of Barth syndrome, or the parent or legal guardian of a minor or dependent with the diagnosis of Barth syndrome. 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 in the future. The answers to the communication questions may be changed at any time in the future by logging into your account.

Complete 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 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 your answers.

Informed Consent

For the purpose of this document “you” and “your” refers to the registrant, either the individual affected by Barth syndrome (affected individual) or the parent, guardian or family member providing the information on behalf of the affected individual (the person legally responsible for the care and maintenance of the affected individual).

1. The Registry has been fully explained to me. I understand the “Understanding my 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.

* This Field is required
Yes

2. Your participation in this project is entirely voluntary. Should you change your mind and wish to withdraw your data from The Registry, you will be free to do so without having to provide any explanation. Do you understand this?

* 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 information with other registries or databases. This information may be used for research or to plan clinical trials. Do you give your permission for your information to be transferred to other registries and databases?

* This Field is required
Yes

4. If researchers learn anything interesting about your condition, do you want to be contacted by the Registry with this information?

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5. The Registry may get information about a clinical trial that you might be eligible for. Do you want 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.)

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6. Is the participant willing to be contacted about donating a (new or existing) sample of blood, tissue, or other biospecimen for research in the future?

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7. It is important that the Registry information is up to date. We will contact you once a year to ask about changes in your medical condition or ask additional questions. We will also send you forms each year to fill out. Do you give us permission to contact you for this information?

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

* This Field is required
Yes

9. If the participant is between the ages of 7 and 17 inclusive they need to read the Participation Assent Form and agree to participate in The Registry

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Risks, Stress, and Discomfort

Participating in the registry will not cause any physical discomfort or be of any risk to your health.

Do you understand what the BRR is?
Do you want to take part in the BRR?
Do you understand you or the person taking care of you can always contact Matt Toth or Shelley Bowen if you have any questions about the registry?

 

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 : Enter a valid username containing at least 3 characters, no spaces and only letters and numbers.
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>

 

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I agree to the terms and conditions

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