About the Consortium

TRACK Consortium

The TRACK (Therapeutic and Regulatory Science Advancement in Congenital Kidney Disease) Consortium is a KidneyFuture Foundation convened, multi-stakeholder effort focused on advancing trial-enabling regulatory science for congenital kidney disease, including CAKUT and related conditions.

The consortium brings together patients and families, clinicians, researchers, registries, industry, and regulators to clarify natural history, distinguish evidence from uncertainty, and develop shared frameworks to support future therapeutic development in a transparent, pre-competitive manner.

Therapeutic.

Regulatory Science.

Advancement.

Our Commitment to Advancing Congenital Kidney Disease Research

From Understanding to Action.
From Fragmentation to Alignment.

Congenital kidney disease is a leading cause of chronic kidney disease in children and young adults, yet therapeutic development has been limited by disease heterogeneity, incomplete natural history, and uncertainty around endpoints and trial design.

The CKD-TRC exists to address these barriers by aligning stakeholders around shared evidence, identifying gaps, and supporting the development of trial-enabling tools that can responsibly accelerate progress.

700+

Multi-Stakeholder Convening

Patients, clinicians, researchers, registries, industry, and regulators engaged as scientific contributors.

25+

Summit-Anchored

Built around the Congenital Kidney Disease Trial Readiness Summit and focused follow-on workstreams.

96%

Global Perspective

Informed by U.S. and international cohorts, research networks, and clinical experience.

1000+

One Purpose

Enable safe, effective therapeutic development for congenital kidney disease.

Building the Future of Congenital Kidney Disease Care, Together.

KidneyFuture convened the TRACK Consortium in response to a clear need voiced by families, clinicians, and researchers. Families affected by congenital kidney disease still face uncertainty, limited treatment options, and few clinical trials designed for their conditions.

By convening the community around shared questions and evidence, the consortium aims to move the field from observation toward action, while centering patient experience and long-term outcomes.

Guidance That Enables Progress

We focus on clarity, not consensus. The consortium highlights what is known, what is uncertain, and where further work is needed to responsibly advance trials.

Patient-Informed by Design

Patient and caregiver perspectives help shape priorities, endpoints, and definitions of meaningful benefit.

Our Scientific Foundation

Expert-Driven. Patient-Informed.

The TRACK Consortium is informed by leading experts in nephrology, congenital kidney disease, trial design, and regulatory science. Scientific discussions emphasize rigor, transparency, and alignment with regulatory expectations.

KidneyFuture serves as the coordinating organization. Participation is voluntary, project-based, and non-exclusive.

Why Participate?

A Shared Space for Trial-Enabling Science

Medically Grounded Dialogue

Discussions are informed by clinical evidence, real-world data, and lived experience.

Pre-Competitive Collaboration

The consortium focuses on shared challenges that no single organization can address alone.

Translational Focus

Workstreams aim to bridge natural history, biology, and trial design considerations.

Transparent Outputs

Meeting summaries and high-level frameworks are shared publicly to benefit the broader community.

Why Participate?

Consortium Participants

Patient & Caregiver Organizations

Ensuring lived experience and patient priorities inform all discussions

Pediatric Nephrology Community

Addressing the unique needs of children with kidney disease

Academic Medical Centers

Advancing clinical research, translational science, and innovation

Research Networks & Consortia

Enabling collaboration, data sharing, and multi-site studies

Pharmaceutical & Biotechnology Companies

Developing therapies and technologies for kidney disease

Regulators & Government Agencies

Contributing scientific perspective on regulatory science

Meet our team

Consortium Coordination

The CKD-TRC is convened and coordinated by KidneyFuture, a patient- and parent-led nonprofit dedicated to improving outcomes for families affected by congenital kidney disease.

Scientific activities are guided by a small planning group of patient representatives and subject-matter experts. Governance and structure may evolve as activities progress.

(No formal membership, fees, or institutional commitments are required.)

Dr. Emma

Lead Therapist

James Miller

Support Coordinator

John Patel

Counseling Specialist

Sarah Miles

Wellness Coach

Dr. Emma

Lead Therapist

James Miller

Support Coordinator

John Patel

Counseling Specialist

Sarah Miles

Wellness Coach

Upcoming Meeting

Congenital Kidney Disease Road to Trial Readiness Summit

April 16–17, 2026 | Silver Spring, Maryland

This upcoming meeting convenes clinicians, researchers, patient representatives, data partners, industry, and regulators to advance shared understanding of congenital kidney disease and align on evidence needed to support future trial readiness.

The summit serves as a foundational convening for the Congenital Kidney Disease Trial Readiness Consortium, informing ongoing collaboration and follow-on workstreams.

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The Congenital Kidney Disease Trial Readiness Consortium is convened by KidneyFuture. Participation by external organizations and individuals does not imply endorsement. Engagement by government agencies occurs in accordance with applicable policies and procedures.

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