The potential research impact of patient reported outcomes on osteogenesis imperfecta

Abstract

Background: Osteogenesis imperfecta (OI) is an inherited connective tissue disorder with many phenotypic presentations ranging from mild to severe. It is often called "brittle bone disease." Treatment consists of physical therapy, surgical interventions, medications and, in some cases, experimental therapies. Because treatment is not standardized and is often experimental, information on the success of different methods is usually not available or well documented.

Questions/purposes: We therefore asked if social networking can make OI patients' lives better. How would a bone disorder community work? Is it possible for patients to know how well they are doing in comparison to others like them, and if they are getting the most successful treatment for their disease?

Methods: An evaluation of how PatientsLikeMe®, a personal research and social networking website and database for patients with life changing illnesses, can aid in improving patient outcomes through the anonymous sharing of medical information.

Results: PatientsLikeMe® could help patients answer the question, "Given my condition, what is the best outcome I could hope to achieve, and how do I get there?" Participants could record their real-time day-to-day progress in achieving their treatment goals, such as preventing fractures, and share that with the community to help patients, caregivers, researchers and industry learn more about OI.

Conclusions: Social networking can change the lives of Osteogenesis Imperfecta patients for the better, and make them a part of the treatment discovery process. Here we present a possible OI online community and demonstrate its potential utility for patients and medical professionals alike.

Fig. 1

This is an example of an osteogenesis imperfecta patient profile.

Fig. 2

This is an example of a possible osteogenesis imperfecta informational “nugget”.