One of the obstacles to performing quality research on a rare disorder like OI is the difficulty in finding enough people to be part of a study. Today, more than ever before, people with OI have opportunities to participate in research. Being part of the growing OI Registry is one important way they can help enhance the progress of clinical research in OI.
What is the OI Registry?
- A confidential web-based database that is a joint effort between the OI Foundation and the Kennedy Krieger Institute.
- An up-to date listing of people with OI. It contains essential information about the medical condition and history of registrants.
What is the Purpose of the OI Registry?
- To increase the impact of current OI clinical investigations and to stimulate future OI research.
How does the OI Registry “work”?
- Through compiling the information from a large number of people who have OI we can increase the network of potential study participants, as well as, improve the dissemination of current information regarding trials, treatments, and breakthroughs related to OI.
- A registry with a large number of members attracts researchers and allows them to consider projects they may not have thought were possible previously. Greater utilization of the OI Registry by researchers also increases patient involvement and confidence by ensuring them that their study participation adds to the power of these clinical studies. The greater the power of the study results, the faster and better research can be converted to clinical solutions.
What are the benefits of participating in the OI Registry?
- You will have the chance to participate in the OI research studies. These may range from online surveys, mail-in questionnaires, or focus groups to clinical trials.
How can you help?
- Join the OI Registry today! (paper-based OI Registry is also available upon request.)
- If you are already a member, please log into your account periodically to update your information.
- Give us your feedback. Please contact the OI Registry Manager at 443-923-9180 or by email at email@example.com to share your suggestions, ideas, and opinions with us.
- The effectiveness of the OI Registry greatly increases with the number of participants and they are an integral part of our success. All parents and adults are urged to
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