Resources for Patients and Families
The Brittle Bone Disorders Consortium (BBDC) and its partner, the Osteogenesis Imperfecta (OI) Foundation, regularly host webinars for the patient community. They also offer a variety of other informational resources targeted at patients and families. Please click on the blue headings below to reveal additional resources, and see the additional list at the bottom of the page.
Longitudinal Study: the Current State of OI Research
On September 22, 2022, the OI Foundation was joined by Dr. Reid Sutton (geneticist at Baylor College of Medicine, administrative director and principal investigator of the Brittle Bone Disorders Consortium, and member of the OIF Medical Advisory Council and Board of Directors) to discuss the Longitudinal Study of Osteogenesis Imperfecta. This study, also known as the Natural History Study, is the largest research project ever conducted on people with OI. Dr. Sutton discussed the design of the study, its goals, and what researchers have learned so far.
BBDC Research Update: New Medical Treatments
Dr. Brendan Lee (principal investigator for the Brittle Bone Disease Consortium) joined the OI Foundation to discuss new drugs being studied to treat osteogenesis imperfecta and the drug development process.
Mental Health and OI
During this session, Dr. Reid Sutton (geneticist at Baylor College of Medicine and OIF Medical Advisory Council member) and Dr. Eric Storch (vice-chair and head of psychology at Baylor College of Medicine) share their experience working with the OI community, outline the new study the BBDC is undertaking around mental health, and explain what they hope to learn.
Dental Health and OI
Dr. Jean-Marc Retrouvey, professor and chair of the Department of Orthodontics and Dentofacial Orthopedics at the University of Missouri-Kansas City, and Tracy Hart, OIF CEO, joined OI community members to discuss current research in dental health and orthodontics.
Women's Health and Pregnancy
Tracy Hart, CEO of the OI Foundation, and Dr. Deborah Krakow, OIF Medical Advisory Council (MAC) member, discuss women's health and pregnancy research.
An Update for the OI Community
On Wishbone Day, May 6, Cameron Penn, president of the OIF Board of Directors, interviewed Dr. Brendan Lee, principal investigator for the Brittle Bone Disease Consortium (BBDC). Their discussion covers the history of the BBDC, current OI research, and answering audience questions.
Howard Hughes Medical Institute: Genetic Mutation Explains Form of Brittle Bone Disorders (October 20, 2006)
Researchers discover cartilage-associated protein (CRTAP), a gene mutation that can affect bone formation, resulting in a subset of cases of osteogenesis imperfecta.
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Office for Human Research Protections (OHRP)
The Office for Human Research Protections (OHRP) provides clarification and guidance, developing educational programs and materials, maintaining regulatory oversight, and providing advice on ethical and regulatory issues in biomedical and social-behavioral research.
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The Genetics Home Reference Website
MedlinePlus is a service of the National Library of Medicine (NLM), the world's largest medical library, which is part of the National Institutes of Health (NIH).
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Kennedy Krieger Institute
The Kennedy Krieger Institute is a research facility dedicated to children, adolescents and adults with neurological, rehabilitative or developmental needs offering resources for patients with osteogenesis imperfecta.
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Merck Manual Home Edition for Patients and Caregivers
The Merck Manual is a comprehensive resource for researchers, clinicians, patients, and families.
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National Organization for Rare Disorders
NORD, a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them, offers resources for the diagnosis and treatment of osteogenesis imperfecta.
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Orphanet: Osteogenesis Imperfecta
Orphanet hosts a portal for rare diseases and orphan drugs that provides reference information and knowledge to all actors of the rare disease ecosystem.
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National Institute of Arthritis and Musculoskeletal and Skin Diseases: NIH Osteoporosis and Related Bone Diseases National Resource Center
The NIH Osteoporosis and Related Bone Diseases National Resource Center provides patients, health professionals, health educators, and the public with an important link to resources and information on metabolic bone diseases, including osteogenesis imperfecta.
Learn MoreRelated Organizations
- American Academy of Orthopaedic Surgeons
- American Society for Bone and Mineral Research
- National Coalition for Osteoporosis and Related Bone Disease: National Action Plan for Bone Health
- National Human Genome Research Institute
- National Osteoporosis Foundation
- National Institutes of Health
- The NIH Osteoporosis and Related Bone Diseases~National Resource Center
- The OI Federation of Europe (OIFE)
- Shriners Hospital for Children Directory