TRM-SLE information for patients
Patient-focused drug development (PFDD)
Nobody knows SLE better than the people affected by it. Despite this, input from SLE patients and their representatives has not always been sought when developing new treatments. It is increasingly recognised that the insights of patients are vital to inform new drug development and evaluation, especially as treatment priorities in SLE often differ between patients and healthcare practitioners, and indeed between patients due to the intricacies of the disease.
This is where patient-focused drug development (PFDD) comes in. PFDD is a systematic approach used to ensure the experiences, perspectives, needs, and priorities of patients are heard and meaningfully incorporated into the process of drug development and evaluation.
For more information on PFDD please visit the FDA Patient-Focused Drug Development website.
Embodying PFDD principles
The TRM-SLE Taskforce is aiming to capture improvements in SLE that are meaningful to patients and their clinicians. By accurately determining whether or not someone has responded to a new treatment in a clinical trial, the TRM-SLE measure will help the lupus community better understand the results of clinical trials of new therapies, which in turn can support the approval and accessibility of new treatments.
We will do this by:
- ensuring each scientific step in the development of the TRM-SLE instrument involves direct participation from SLE patients.
- establishing a Patient Advisory Panel.
- including patient representatives on our Steering Committee and Scientific Advisory Board.
- partnering with organisations such as the Lupus Foundation of America and Lupus Europe.
Research summaries for patients
Coming soon.
Useful links
Contact us
To express interest in being involved in the TRM-SLE project or for any general enquiries related to the TRM-SLE project, please contact us.