First Patient-Led Project
Acting as the catalyst to advance the needs of patients with TMJ implants, TMJA developed the TMJ Patient-led RoundTable (RT) – a patient-centered, public-private collaboration among the federal government, scientists, clinicians, dentists, advocates, manufacturers and others.
The Patient-led RoundTable (RT) was originally developed to understand why some TMJ patients improve with implant surgery, while others worsen. Since, it has evolved into a comprehensive initiative to understand all aspects of TMJ disorders including risk factors, disease mechanisms, clinical treatment practices – and how these interact to affect patient outcomes for all treatments. The goal is to establish a scientifically valid roadmap that can reliably predict treatment outcomes for individual patients.
The RT is the first patient-led project of the Medical Device Epidemiology Network (MDEpiNet), a public-private partnership developed to bring real world data and patient experiences together with a broad array of experts to conduct studies aimed at improving outcomes for implant patients worldwide.
A unique aspect of the RT is that it is patient-centered. As such, we invite you – TMJ patients – to get involved. Your participation can range from participating in surveys from home to participating in meetings and advocacy efforts in Washington DC. Please join us and be part of the solution! Register with us as a patient advocate and join the RoundTable.
Accomplishments
The first in-person meeting of the TMJ Patient-Led RoundTable (RT) was held on June 16, 2016, at FDA headquarters in Silver Spring, MD. This gathering resulted in the formation of four Working Groups, each tasked with addressing key areas of study, and a Steering Committee to oversee the project as a whole. The Working Groups focused on the following areas:
- Natural history and assessment of biomarkers associated with outcomes in TMJ implant patients
- Evaluation of Patient-reported outcomes
- Physician and patient education/patient-centered treatment
- Data collection and analysis
The RT Working Groups developed the following key reports:
- WhitePaper – The TMJ Patient-Led RoundTable: A History and Summary of Work
- Priority Listing of Research Recommendations & Agency Assignments
- Diagnostics
- Stigma
- TMD and Nutrition Summary
- TMD Treatment Meta-Analyses & Systematic Reviews
- Dental Education Update
- Summary TMJ Components and Repair
The RoundTable reconvened on May 11, 2018, again at FDA headquarters, to provide updates on the Working Groups’ progress, identify critical gaps in TMD knowledge, and outline data needs for the development of high-quality, real-world evidence. The group concluded that a strategically Coordinated Registry Network is essential to collect and generate accessible, relevant, and reliable data on temporomandibular disorders and their treatment. This data is vital to better understand the wide variability in patient care pathways and outcomes.
In response, development of the TMJ Coordinated Registry Network (TMJ-CRN) was launched in 2019.
The TMJ Patient-led RoundTable meeting series, TMJ Patients at Critical Crossroads was held on:
Publications resulting from the RT Working Groups include:
- Building the foundation for a modern patient-partnered infrastructure to study temporomandibular disorders.
- Focus Groups to Inform the Development of a Patient-Reported Outcome Measure (PROM) for Temporomandibular Joint Disorders (TMDs).
- How dental teams can help patients with temporomandibular disorders receive general dental care: An International Delphi process.
- Advancing the Real-World Evidence for Medical Devices through Coordinated Registry Networks.Â