A systematic process for recruiting physician-patient dyads in practice-based research networks (PBRNs).

Background: Recruiting physicians and patients for primary care research is difficult, and low participation can greatly affect the validity of research. While practice-based research networks (PBRNs) offer advantages of scale for recruitment, the barriers are perennial. We designed a systematic process for recruiting physician-patient dyads in PBRNs and tested it in EXACKTE2, a large, cross-sectional, dyadic study.

Shaping and managing the course of a child's disease: parental experiences with osteogenesis imperfecta.

Background: Osteogenesis imperfecta (OI), a rare genetic disease, causes increased bone fragility. The course of childhood chronic conditions particularly rare genetic diseases can be modified by both child and parents. However with limited research, shaping and managing that process is not well understood.