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As a participant of the registry you will be contributing valuable information about your experience with OI and encouraging research that will lead to a better understanding of OI in all age groups and all types. As a participant in the registry you will be informed about existing research studies pertaining to persons with OI, and given the opportunity to consider participating in a study. Neither the Kennedy Krieger Institute, Inc., which assisted in the development of this site, nor the Osteogenesis Imperfecta Foundation recommend specific research studies, nor do they recommend or endorse your participation in any research program identified on this website. Information about research studies is provided as a service to OI Registry Members. You may have a few questions about the OI Registry: What is the Registry ? The purpose of the Registry is to create an up to date listing of people with Osteogenesis Imperfecta. The list contains essential information about the condition and history of registrants. The Registry is directed by the participants. Participation requires consent from each registered participant. The information supplied is protected for privacy, and will be made available to investigators wishing to do approved research based on information provided by indiviual participants. Investigators may contact specific registered groups required for their research with the participant's consent. Why Should I Participate ? There is no other broad summary of information about persons with OI. By combining your information about your experience with OI, you will help stimulate research into OI. The benefits to you as an individual may not be immediately apparent, but the benefits of a pooled data base (Registry) have been shown to help research. It has been proved that other Registries have helped progress in other disorders. Even so it is important to understand that if you choose not to participate, it will have no effect on your relationship with other medical providers, The Kennedy Krieger Institute, or the Osteogenesis Imperfecta Foundation. Do I Need to Sign a Consent Form ? A Consent form (for adults), or an Assent form (for children and their parents) is required. Participation in the OI Registry is voluntary and dependent upon agreement to the consent form. What is the Questionnaire ? This Questionnaire is designed to gather information about medical history that may be relevant to medical care for people who have Osteogenesis Imperfecta (OI) and to medical personnel conducting OI research. It will be most helpful if you complete as much of the Questionnaire as possible, but there are questions that are a critical portion to why this registry exists. The information provided will be entered into the registry database under a code number. Your name and all of your contact information will be kept confidential. When information in the database is distributed to other OI patients or investigators, names will not be associated with this questionnaire. Thus, your name and all of your contact information will be kept confidential. Please take a few minutes to go through the registration form. At the end you will be asked for consent to save your information into our OI database. If you do not feel comfortable with sharing the information required to complete the registration, you may stop at any time. None of your information is saved until you submit the information at the very end. How Often Will I be Contacted to Update My Information ? Each year an email is sent out to each participant which will allow annual updates to your questionaire. However, if you wish, you can contact the Registry Manager to add important information at any time. ?Que si hablo solamente espanol? El registrant debe prever la traduccion localmente para poder contestar las preguntas electronicas en ingles. International registrants are welcome to participate in the OI Registry. Your information will be saved with other members from your country, and we will contact you to inform you about any research projects being conducted in your country that you may wish to take part in. Your information will be kept confidential, and you may choose whether or not you wish to contact the researcher to participate in their study. Providing information and participating in the Registry is completely voluntary, and there is no obligation to participate in any research study.

Additional questions about the registry or the questionnaire should be directed to the Registry Manager.


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