OI:OI Registry Reaches 1000 Members

1.24.08 - The Registry registered its 1000th individual on January 24, 2008. This represents a milestone since the OI Registry launched in 2006. Not only has membership increased, but it is notable that interest in using the OI Registry has also grown. Since June 2007, two protocols have been completed, three are ongoing, and six new protocols are pending submission. The fruit of our efforts has begun to take form as exciting new publications and presentations conducted on large numbers of OI individuals are emerging.

A young graduate student, Elizabeth Janoski from Case Western University, will present her thesis project called “The Attitudes of Adults with Osteogenesis Imperfecta toward Pre-implantation Genetic Diagnosis” at an annual American College of Medical Genetics (ACMG) meeting held on March 12-16, 2008 in Phoenix, Arizona. This will be the first OI research project completed through the OI Registry whose findings will be presented to the public. Over 230 responded from the OI Registry. Janoski said, “The OI Registry affords researchers interested in studying OI a unique opportunity to utilize an excellent resource of potential study participants with this condition from across the country. The OI Registry was instrumental in assisting me in reaching people with OI to participate in my master’s thesis research. The response rate for my study would not have been as great as it was without the help of the Registry Manager. The Registry members were eager to participate, very responsive and above all, very appreciative. Working with the OI Registry has been a wonderful experience.”

This news should encourage even young scholars to pursue research topics in OI using the OI Registry and challenge veteran investigators to take hold of this valuable resource.

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