Linked Clinical Research Centers

A joint initiative from the OI Foundation and the Children’s Brittle Bone Foundation, the Linked Clinical Research Centers (LCRC) are a nationwide network designed to provide the highest-quality of standardized medical care for people living with osteogenesis imperfecta. All of the LCRC sites have a multidisciplinary group of specialists with extensive experience caring for children who have OI.

In addition to providing high-quality standardized care, the LCRCs, through a coordinated effort, will aim to advance standards of care and improve treatment through clinical research. By sharing data, the Centers will be capable of tracking how OI changes across a lifetime, what complications are common, and which treatments are beneficial.

 

Contact Information for all Study Sites
For detailed information about participating, please speak with a study coordinator at one of the following sites.

Baylor Medical Center, Houston, TX
Contact Person:  Mary Mullins, RN
Phone Number:  832-822-4263 or 1-800-364-5437 ext. 24263
Email: mullins@bcm.edu
Enrolling children and adults with OI; all ages; all types

Kennedy Krieger Institute, Baltimore, MD
Contact Person:  Pamela Melvin, RN
Phone Number:  443-923-2707
Email:  Melvin@kennedykrieger.org
Enrolling children and adults with OI; all ages; all types

Oregon Health & Science University / Portland Shriners Hospital, Portland, OR
Contact Person:  Abigail Hata, MS CGC 
Phone Number:  503-418-1061
Email:  hata@ohsu.edu
Enrolling children and adults with OI; all ages; all types

National Institutes of Health, Bethesda, MD
Contact Person: Catherine Reisenberg, FNP, PhD
Phone Number: 301-496-0741
Email: oiprogram@mail.nih.gov
Enrolling children with OI types III and IV; follow-up offered into young adulthood

Shriners Hospital for Children, Chicago, IL
Contact person:  Angela Caudill, MPT
Phone Number:  773-622-5400   EXT. 5271
Email:  acaudill@shrinenet.org
Enrolling children and adults with OI; all ages; all types

Shriners Hospital for Children, Montreal, Quebec Canada
Contact person:  Michaela Durigova, PhD
Phone Number:  514-282-7158
Email:  mdurigova@shriners.mcgill.ca

Children and adults with OI; all ages; all types will be eligible

 

Longitudinal Study of Osteogenesis Imperfecta

The OI Foundation is pleased to announce the “Longitudinal Study of Osteogenesis Imperfecta.”  All of the LCRC sites will be participating in the natural history of OI study.

What is a Natural History of OI Study?
“The Longitudinal Study of Osteogenesis Imperfecta” is a natural history study. It will collect and analyze information about the health of people who have OI. To be successful, this study must include as many people as possible and include children and adults of all ages from infancy through senior citizen and all types of OI from the mildest to the most severe. Our goal is to enroll 500 people. Each study center will be collecting exactly the same type of health information in the same way from all participants. This information is then entered into the LCRC secure, anonymous, central database.

Study Information
Study participants are required to visit the Linked Center once a year for 5 years. Each person will be asked for a detailed medical history and receive an extensive annual physical exam including various diagnostic studies such as a DEXA. Participating in this natural history study does not replace a person’s regular health care team and does not interfere with any other research studies he or she may already be enrolled in.


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