BBD Consortium Renewal

A recent 5-year renewal of funding through the NIH Rare Diseases Clinical Research Network ensures that the Osteogenesis Imperfecta Clinic at Children’s Hospital and UNMC will continue serving osteogenesis imperfecta (OI) patients and conducting clinical research on OI treatments. The multidisciplinary clinic in Omaha is one of 14 centers in the Brittle Bone Disorders (BBD) Consortium, led by Baylor College of Medicine.

maegen-wallaceDr. Maegen Wallace, Assistant Professor of Pediatric Orthopaedic Surgery, is Site PI for Omaha’s OI Clinic, which first enrolled patients in the study in 2015. Clinician-investigators with specialties in genetics, endocrinology, orthopaedic surgery, dental, physical therapy, occupational therapy, nutrition, radiology, audiology, and pulmonary medicine collaborate together in the OI Clinic.

Dr. Wallace kindly responded to a few questions about the BBD Consortium’s agenda.

Q: What are the Omaha clinical site’s research objectives?

A: “We will continue to recruit and enroll patients into the study and continue to include the patients that have already been involved in the study. The goal of the study is to have longitudinal data of our patients over years to better identify medical issues that they have and to see how medical and surgical interventions change the natural history of the disorder.”

Q: What would you like the larger pediatric community to know about the BBD Consortium and the patient populations involved?

A: “We would like the larger pediatric community to be aware of the large unique patient population that we have here with our nationally recognized OI clinic. We have nearly 100 patients enrolled in the longitudinal study and have more than 250 patients see us each year in our OI clinic. The OI population is unique and diverse with a wide range of severity of the disease and with new and upcoming research new medical treatments are on the horizon. It is a very exciting time to be in the OI research and patient care arena.”

Q: Are there collaboration possibilities for other CHRI investigators?

A: “There are always potential research collaboration possibilities with the OI population. We have an OI database through CHMC/UNMC and would be happy to talk with anyone who might be interested in OI research.”

Q: The OI Foundation’s National Conference will take place in Omaha in 2020. Will there be ways for CHRI investigators and staff to show support?

A: “We do have the honor of being the host city for the biannual OI Foundation meeting, with the meeting next summer celebrating 50 years of the OIF. There will likely be unique ways for individuals in Omaha to be able to be involved with the meeting, including some possible research opportunities. One practical way will be to volunteer or participate in the OIF Walk-N-Wheel, a fundraising event that will be the kick-off event to start the meeting on Thursday July 9th in downtown Omaha.”