Register
Required. 150 characters or fewer. Letters, digits and @/./+/-/_ only.
  • Your password can’t be too similar to your other personal information.
  • Your password must contain at least 8 characters.
  • Your password can’t be a commonly used password.
  • Your password can’t be entirely numeric.
Enter the same password as before, for verification.

Consent Information

Please read the "Informed Consent for Participating in the CLN1 registry" before consenting to the following conditions.

  • I understand that my participation in the registry is voluntary and that I can change my mind and withdraw at any time.
  • I understand that all attempts will be made to protect my privacy and my family's privacy. I understand that my personal information will be separated from my answers to questions. However, there is a very small risk that my identity could be revealed.
  • I understand that my de-identified information can be used for research on CLN1 Batten disease research.
  • I understand that I may not personally benefit from participating in the registry or from the use of my de-identified medical information in any research study.
  • I understand that I can withdraw from the registry at any time and remove my contact information. I also understand that any information given previously and already deidentified cannot be removed.
  • I understand the content of this form and all my questions were answered. I had enough time to decide that I want to participate in this registry. I was given a copy of this consent form and background information about the registry.