Brittle Bone Disorders
Consortium Contact Registry for People with OI
Every person who has OI – child or adult --
is eligible join this registry!
this registry is your opportunity to participate in the next wave of important
research about OI.
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
Facts about the Contact
registry replaces all previous OI Registries.
of the information is stored in a safe and secure manner through the University
of South Florida.
detailed information see the Brittle Bone Disorders Consortium website and click on Learn More.
How to Join the Contact
is easy and takes about 5-20 minutes.
your name and contact information you will be asked to answer a few general
questions about your health and your quality of life.
process is done on-line.
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.
join go to www.rarediseasesnetwork.org/cms/bbd/Get-Involved/ContactRegistry
and click on JOIN.
OI Foundation thanks you, in advance, for joining this registry.