Patients Currently in the RDCRN Contact Registry:
Patients Currently in the CReATe Connect:
RDCRN Contact Registry
Join CReATe Connect
An RDCRN Contact Registry

CReATe Connect, A Rare Diseases Clinical Research Network (RDCRN) Contact Registry for the Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium (CReATe), is a way for patients with ALS, related disorders, and their family members to learn about CReATe research studies they may be able to join. Participation is completely voluntary and you may choose to withdraw at any time. There is no cost to join CReATe Connect.


Click “Join” to begin enrolling in the CReATe Connect. You will be asked to provide consent and authorize use and disclosure of protected health information during enrollment.


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Contact the RDCRN at if you have questions about the RDCRN Contact Registry.



You will:

  • Receive news about new or ongoing studies for rare diseases
  • Receive information about rare diseases
  • Receive information on activities from patient advocacy groups
  • Have the opportunity to share information about yourself with researchers and patient advocacy groups
  • Have a chance to be contacted directly by researchers to join studies in clinic or online
Patients with rare diseases and their family members living in any country are encouraged to join.

You may choose to share your contact information with researchers and/or with patient advocacy groups. Sharing your information is completely optional.

If you agree to share your contact information, the information you enter into the CReATe Connect Enrollment Form will be sent to the researchers and/or patient advocacy groups that you choose so that they may contact you directly.

When you share your contact information with researchers, they may use your information to match you with current studies. They may also contact you to ask you for additional information in order to determine whether you can join a study.

If you do not want any of your contact information to be sent to researchers or patient advocacy groups, you can choose "Please do not share my information with anyone." Choosing not to share your information will not affect your ability to join CReATe Connect or research studies.

No, joining CReATe Connect is not the same thing as joining a clinical research study. CReATe Connect notifies you of research studies you may be interested in joining.

Once you join CReATe Connect, you will receive emails with information about current research studies for rare diseases. In these emails, you will be given information about how to join the research study. You will also be able to contact the researchers to ask any questions about the study.

Yes. Choosing to join CReATe Connect does not affect your ability to join other registries.