The OIFE would like to bring your attention to a research study investigating cardiopulmonary outcomes and quality of life in adults with OI. The clinical examination part is only recruiting people from the USA. But the internet based questionnaire/survey is open for any person with OI 18 years of age or older as long as he/she can write/read English.

You can find the survey here:

Hospital for Special Surgery (HSS) in New York, USA, is sponsoring a pilot study in which researchers are exploring respiratory function and its relation to quality of life, type of OI, presence of scoliosis/chest wall deformity, and other factors such as age or co-existing co-morbidities.

We hope that you will take the time to complete the St. George’s Respiratory Questionnaire and Additional Questions so that we can learn more about the relationship between respiratory function and quality of life in adults with OI.

HSS is committed to protecting the privacy of your information, and wants you to understand how information you provide will be used and protected. All the information you provide in the questionnaires will be shared only with others who are participating in or sponsoring this study, or who have administrative or regulatory oversight of this study. Everyone who sees your information has agreed to protect it. Published study results will not contain information that could identify you. Whenever possible, all information that identifies you will be removed before your information is shared. If you do not agree to participate in this study, it will not affect the health care you receive. You may revoke your permission to use your information in this study by writing to the study contact. If you have any questions about how your information will be used and protected, please contact Elizabeth Yonko (see below). Follow this link to complete the questionnaires:

Individuals 18 years of age or older who have a diagnosis of OI are eligible for this single-visit research study, which aims to enroll 50 participants. If you have any questions about the study or your eligibility, please reach out to Elizabeth Yonko. Your completion of the above questionnaires will not impact your participation in the pilot study.

If you have any interest in enrolling in the pilot research study, Hospital for Special Surgery in New York City is actively recruiting study participants. Contact information for the study site is listed below.

Elizabeth Yonko
Research Technician
Hospital for Special Surgery
535 East 70th Street Research Institute, 4th Floor
New York, NY

10021 (212) 774-2355

The OIFE is not involved in the design or management of this research, and as such, is neither endorsing nor supporting this study. The mission of the OIFE is to keep the OI community informed of all relevant studies. This information is made available as a service to the OI community.