The PARASOL APOL1 Interim Meeting brought together clinicians, statisticians, trialists, industry partners, patients, regulators, and advocates from around the world to accelerate solutions for APOL1 kidney disease. Across two days of plenaries and breakout groups, participants aligned on key priorities: defining robust surrogate endpoints to support regulatory approval of new therapies, harmonizing phenotypes across diverse APOL1 kidney presentations, and ensuring the analysis is inclusive of patients with varying levels of proteinuria, comorbidities, and disease stages. The meeting underscored strong momentum from the prior PARASOL FSGS work and reinforced that APOL1 biology, clinical data, and trial design are now converging in a way that can meaningfully change outcomes for patients.
A central outcome of the meeting was a clear consensus that progress now depends on pooling longitudinal, individual-level data from as many high‑risk APOL1 cohorts as possible. Discussions highlighted the critical value of at least 1–2 years of follow‑up with repeated eGFR and proteinuria measures, medication exposure, and key comorbidities to refine risk prediction and validate surrogate endpoints across different phenotypes and age groups. Participants also stressed the importance of equitable, globally inclusive data that reflects the populations most affected by APOL1 risk variants.
If you manage a registry, clinical cohort, trial, or biobank with longitudinal kidney data and APOL1 genotyping—or the ability to genotype—PARASOL invites you to join this collaborative effort. By contributing de‑identified longitudinal datasets (including eGFR, proteinuria, outcomes, and treatments), you can directly shape regulatory‑grade endpoints and help unlock targeted therapies for people living with APOL1 kidney disease worldwide. Reach out to the PARASOL team at parasol@is-gd.org to explore data partnership options and become part of this global initiative to transform care and outcomes.
PARASOL-APOL1
Primary Investigators
Laura Mariani, University of Michigan
Rulan Parekh, University of Toronto
Keisha Gibson, University of North Carolina
Senior Advisor
Matthias Kretzler, University of Michigan
Data Analysis Lead
Abigail Smith, Northwestern University