Brittle Bone Disorders Consortium Contact Registry for People with OI

Every person who has OI – child or adult -- is eligible join this registry!

 

Joining this registry is your opportunity to participate in the next wave of important research about OI.

The Rare Diseases Clinical Research Network (RDCRN) Contact Registry for People with OI is a project of the Brittle Bone Disorders Consortium. It is a state of the art registry of contact information for children and adults who have OI. It makes it possible to:

  • Expand knowledge about OI through the information provided by registry members.
  • Reach out quickly to people with OI who are eligible for a new study
  • Update registry members on study results and other news.

 

Facts about the Contact Registry

  • This registry replaces all previous OI Registries.
  • All of the information is stored in a safe and secure manner through the University of South Florida.
  • For detailed information see the Brittle Bone Disorders Consortium website and click on Learn More.

How to Join the Contact Registry

  • Joining is ease and takes about 5-20 minutes.
  • Besides your name and contact information you will be asked to answer a few general questions about your health and your quality of life.
  • The process is done on-line.
  • A paper form is available from the OI Foundation if needed. Call 301-947-0083 or 844-889-7579 or send an email to Bonelink@oif.org to request one.

 

To join go to www.rarediseasesnetwork.org/cms/bbd/Get-Involved/ContactRegistry and click on JOIN.

The OI Foundation thanks you, in advance, for joining this registry.

7/27/15


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