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RDCRN GDMCC Contact Registry

  Get Involved   >   RDCRN GDMCC Contact Registry
Patients Currently in the RDCRN Contact Registry:
 
 
Patients Currently in the RDCRN GDMCC Contact Registry:
 
RDCRN Contact Registry
Join the RDCRN GDMCC Contact Registry

The Rare Diseases Clinical Research Network (RDCRN) Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) Contact Registry is a way for patients with disorders of mucociliary clearance and their family members to learn about GDMCC 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 RDCRN GDMCC Contact Registry.

When you join the RDCRN GDMCC Contact Registry, you will be asked to… ("You" means you, your child or the person for whom you are providing care)
Tell us about yourself
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  • Contribute to knowledge about rare diseases by answering questions about yourself, your health, and your quality of life. We may also ask you questions about your family history.
  • It may take from 5 to 30 minutes to answer the questions.
Agree to let us contact you
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We may contact you about:
  • Opportunities to participate in studies that may lead to improved care and outcomes for patients with rare diseases
  • Updating information you have already entered
  • Providing more information
 
The RDCRN GDMCC Contact Registry will…
Let you share your information
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  • You can choose to share your information directly with GDMCC study doctors, research staff and patient advocacy groups (PAGs).
  • Your information will be stored in our secure database and kept confidential to the extent permitted by law.
Keep you informed
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We may send you information about:
  • Mucociliary clearance
  • New and ongoing research studies
  • Clinical centers where you may be able to participate in studies
  • What is being learned from studies
  • Other announcements and activities
 
 
JOIN
 

Click “Join” to begin enrolling in the RDCRN GDMCC 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.

 
 
 

FAQs

? What are the benefits of joining 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 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.