Patients Currently in the RDCRN Contact Registry:
 
 
Patients Currently in the VCRC Contact Registry:
 
RDCRN Contact Registry
Join the VCRC Contact Registry

The Rare Diseases Clinical Research Network (RDCRN) Vasculitis Clinical Research Consortium (VCRC) Contact Registry is a way for patients with vasculitis diseases and their family members to learn about VCRC 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 the Contact Registry.

JOIN
 

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

 

Already joined? Login here

 

Contact the RDCRN at RDCRNContactRegistry@epi.usf.edu if you have questions about the RDCRN Contact Registry.

 
 
 
 

Patient Contact Registry Frequently Asked Questions

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 RDCRN Contact Registry 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 the RDCRN Contact Registry or research studies.

No, joining the RDCRN Contact Registry is not the same thing as joining a clinical research study. The RDCRN Contact Registry notifies you of research studies you may be interested in joining.

Once you join the RDCRN Contact Registry, 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 the RDCRN Contact Registry does not affect your ability to join other registries.