The research question
How do patients describe symptom variation, and which changes matter to their ability to function?
Proposed design
Short qualitative interviews followed by repeated patient-reported assessments in a defined lupus population.
Illustrative design: interviews plus an 8- to 12-week diary; setup and recruitment are scoped separately.
Data to collect
- Fatigue severity and interference
- Pain and skin-symptom experience
- Sleep and daily functioning
- Treatment burden and reported care changes
Planned outputs
- Patient-defined meaningful changes
- Symptom and impact trajectories
- Unmet needs and assessment recommendations
What we confirm with you
We agree the population, sample size, country, collection tools, analysis plan and budget. Collection starts after the required consent, ethics or other permissions and a signed scope are in place.
- Define systemic lupus and lupus nephritis cohorts separately
- Do not equate reported flares with adjudicated disease activity
- Check rights and content validity for selected instruments
Clinical records, laboratory results, photographs and device integrations are included only when access, collection quality and permitted use have been verified. Self-reported findings are identified as such.
Research context
These published sources explain the research need or method. They are not RIDLY customers, endorsements or purchase commitments.
- GSK lupus nephritis study 212981
This completed survey and interview study examined fatigue, health-related quality of life and treatment experience.
Related dataset profiles
For an existing-data inquiry, start with a coverage review.