Qualitative Feedback on Patient-Centered Endpoints for Nephrotic Syndrome Trials

Supplementary material from the Prepare-NS project details qualitative interview and survey feedback from clinical trial stakeholders on Clinical Outcome Assessments for nephrotic syndrome. The document contains research partner insights on endpoint design, assessment timing, and feasibility. The work was authored by a figshare admin for Karger and last updated in April 2026.

Use Cases

• Analyze qualitative feedback on preferences for COA assessment timing and frequency from trialists.
• Identify key considerations for operationalizing swelling-related endpoints based on stakeholder survey results.
• Compare participant-expressed support for COA-based endpoints versus clinical or biomarker endpoints like proteinuria.
• Review insights on the feasibility of daily symptom diaries and potential confounding factors for trial design.

Strengths

• Feedback sourced from a targeted group of clinical trialists across industry, academia, and patient advocacy.
• Explicitly addresses a recognized gap in capturing patient-centered treatment benefits in nephrotic syndrome.

Limitations

• Dataset is a 54.6 KB DOCX file containing qualitative summaries, not raw quantitative or patient-level data.
• Sample size and demographic details of interview and survey participants are not provided.

Provenance

Source

figshare admin for Karger, associated with the Prepare-NS project supported by the FDA's Center for Drug Evaluation and Research Pilot Grant Program.

Collection Method

Qualitative interviews and surveys conducted with clinical trialists.

Freshness

Last updated in April 2026, indicating recent curation.