Make an important contribution to understanding OI. Join the OI Registry and put your experience on the record.
The OI Registry is:
A confidential database of people with OI. It collects information about the OI symptoms experienced by each adult and child.
A web-based questionnaire that is filled out by adults who have OI or by parents of children who have OI.
A replacement for all previous registries.
Why it is important to join the OI Registry:
To be successful, the OI Registry will need to involve as many people who have OI as possible. It important that all types of OI are represented.
OI is a rare disorder and very little is known about its natural history.
The Registry will gather accurate information about OI in children and adults.
This information will provide insight into how OI is experienced across the life span. This information is not currently available.
The Registry will encourage more research into OI.
Other benefits of participating in the OI Registry:
Through the Registry you will be offered the opportunity to participate in a variety of quality research studies, including surveys and clinical trials. This will lead to learning more about the basic science, treatments, potential cures, and natural history of OI.
You will learn about the latest in OI research.
How the OI Registry works:
The web-based questionnaire is filled out by adults who have OI or by parents of children with OI. The Registry Manager is available by phone at (443) 923-9180 and via e-mail at firstname.lastname@example.org to answer questions.
The information is recorded in a secure database, and each participant is assigned an identification number. Your personal information is protected and will never be released without your permission.
Information in the Registry will be studied to see what it shows about symptoms at every stage of life and in every type of OI.
The OI Registry will be advertised to researchers. The existence of a database of information about OI and the ability to contact people with OI who might be interested in participating in a research study will encourage more research.
When a researcher wants to use the OI Registry for a study, they send a request with detailed information about the project to the OI Registry Manager. All research projects must be approved by the Registry Advisory Committee, which assesses quality of study design and safety.
If you or your child are eligible for a study, based on the information provided in the questionnaire and the scope of the research project, you will be notified by the Registry Manager and asked if you wish to participate