How Our Research Impacts You
Every person living with osteogenesis imperfecta has a different story. By bringing those experiences together, researchers can better understand OI, focus on the challenges that matter to patients and families, and build knowledge that can guide future research.
Research Starts With Questions From the OI Community
What changes as a child with OI grows? How does OI affect pain, movement, dental health, emotional well-being and daily activities? How can researchers measure whether a future treatment is helping? BBDC brings patients, families, clinicians, researchers and advocacy partners together to investigate questions like these.
Your experience creates knowledge.
Information shared by research participants helps investigators see patterns that cannot be understood by studying only one person, one clinic or one moment in time.
How Research Can Make a Difference
Research is a process. Each study adds another piece to what is known about OI and helps researchers decide what to investigate next.
You Share Your Experience
Participants may contribute health information, complete questionnaires, provide samples, undergo imaging or return for follow-up visits, depending on the study.
Researchers Study Patterns
Information from participants across multiple clinical sites helps researchers examine similarities, differences and changes over time.
Findings Become Evidence
Researchers analyze and publish results so the wider scientific and medical communities can learn from the work.
Evidence Guides the Next Question
Findings can identify unmet needs, improve study design and support the development of future clinical research.
Building Knowledge for Life With OI
BBDC research looks beyond broken bones. Research examines the many ways OI can affect health, function and quality of life.
Better Answers About OI
Studying genetic causes and differences among types of OI helps researchers understand why the condition can affect people in different ways.
A Clearer Picture Over Time
Long-term research shows how health and daily experiences may change across childhood, adolescence and adulthood.
Research Shaped by Real Needs
Patient experiences help highlight concerns such as pain, mobility, dental health, emotional well-being and participation in everyday life.
Stronger Future Studies
Researchers need reliable ways to measure disease progression and meaningful change before potential treatments can be evaluated effectively.
Progress Toward New Approaches
Laboratory findings, observational studies and early clinical trials help determine which ideas should be studied further.
Knowledge for Future Generations
Because OI is rare, every contribution helps create a stronger research foundation for the people and families who come next.
What BBDC Researchers Are Learning
These examples show how participant information and collaborative research are helping investigators examine questions that matter across the lifespan.
Following the OI Journey Over Time
BBDC's longitudinal research follows participants across multiple years. This helps investigators study disease progression and examine skeletal health, quality of life and psychosocial experiences together.
Making Pain a Research Priority
Patient input identified pain as a major concern for adults living with OI. BBDC's current research includes a study of an intervention designed to address pain interference.
Studying Function, Not Only Appearance
Research involving children and adolescents with OI examined how specific bite differences relate to oral symptoms and functional limitations. The findings helped support additional study of orthodontic interventions.
Moving From the Laboratory to Clinical Research
BBDC investigators have studied biological pathways involved in OI and conducted early-phase clinical research. These studies help researchers determine whether potential treatment approaches should move forward for additional testing.
What Patients and Researchers Have Built Together
One Study Adds Knowledge. A Research Network Builds Momentum.
BBDC connects clinical sites, investigators, participants and the Osteogenesis Imperfecta Foundation so research can address complex questions across multiple areas of health.
- Approximately 1,000 participants enrolled in longitudinal research
- Multicenter studies that bring together information from across the United States and Canada
- Interventional studies addressing bone, dental health and patient-identified needs
- Pilot studies that allow investigators to explore new questions and research approaches
- Published findings shared with the wider scientific community
Turning What We Have Learned Into the Next Phase of Research
BBDC's current work builds on information contributed during the consortium's first decade.
Longer Follow-Up
Continued longitudinal research will help investigators examine how OI and its complications progress over time.
More Detailed Genetic Information
Whole-genome sequencing will help researchers investigate genetic findings and support efforts to strengthen diagnosis.
Better Ways to Measure Change
Advanced imaging will be studied as a possible way to measure skeletal progression and support future clinical trials.
You Can Be Part of What Comes Next
Research participation is a personal decision. Learning about the purpose of a study, what participation involves, and the potential risks and benefits can help you decide whether a study may be right for you or your family.