RECRUITING

DFT383 in Pediatric Participants With Nephropathic Cystinosis

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

An open-label, multi-center, phase I/II study to assess the safety, tolerability and efficacy of DFT383 in pediatric participants with nephropathic cystinosis, followed by a long-term extension phase. The purpose of this clinical study is to assess safety, tolerability, and efficacy of DFT383 in participants aged 2 to 5 years with nephropathic cystinosis. The study consists of a Core Phase and a long-term Extension Phase. DFT383 is a cellular gene therapy. This study includes an active arm (Cohort 1) of participants treated with study treatment DFT383 and a concurrent reference arm (Cohort 0). Participants in Cohort 0 will not receive study treatment and will only participate in the Core Phase of the study. The study is not randomized and Cohort 0 aims to collect prospective and concurrent data in this rare disease.

Official Title

An Open-label, Multi-center, Phase I/II Study to Assess Safety, Tolerability and Efficacy of DFT383 in Pediatric Participants With Nephropathic Cystinosis, Followed by a Long-term Extension Phase

Quick Facts

Study Start:2025-06-02
Study Completion:2044-03-14
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT06910813

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:2 Years to 5 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD
Inclusion CriteriaExclusion Criteria
  1. 1. Informed consent in writing from parent(s) or legal guardian(s) must be provided
  2. 2. 2 to 5 years of age (including 5 years and 364 days old) at Screening
  3. 3. Weight-for-stature is ≥ the third percentile, and is ≥ 10 kg
  4. 4. Oral cysteamine therapy for at least 6 months
  5. 5. Historic clinical diagnosis of nephropathic cystinosis
  6. 6. Laboratory evidence of of renal fanconi syndrome (RFS)
  7. 7. Relatively preserved kidney function (eGFR ≥ 60mL/min/1.73m2)
  8. 8. Received all age-appropriate vaccinations
  9. 1. A history of kidney transplantation
  10. 2. A prior or planned bone marrow or stem cell transplantation or prior treatment with gene therapy
  11. 3. History of malignancy
  12. 4. A severe or uncontrolled medical disorder
  13. 5. Major surgery within 90 days
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Novartis Pharmaceuticals
CONTACT
1-888-669-6682
novartis.email@novartis.com
Novartis Pharmaceuticals
CONTACT

Study Locations (Sites)

University of California at San Diego - Rady Children's Hospital
San Diego, California, 92123
United States
Stanford University - Stanford Children's Health
Stanford, California, 94305
United States
Emory University School of Medicine - Children's Healthcare of Atlanta (recuiting Cohort 0)
Atlanta, Georgia, 30322
United States
Baylor College of Medicine - Texas Children's Hospital (recuiting Cohort 0)
Houston, Texas, 77030
United States

Collaborators and Investigators

Sponsor: Novartis Pharmaceuticals

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2025-06-02
Study Completion Date2044-03-14

Study Record Updates

Study Start Date2025-06-02
Study Completion Date2044-03-14

Terms related to this study

Keywords Provided by Researchers

  • Cystinosis
  • Nephropathic cystinosis
  • Lysosomal storage disorder
  • CTNS gene
  • DFT383
  • Cellular gene therapy
  • Cysteamine
  • Renal Fanconi syndrome

Additional Relevant MeSH Terms

  • Nephropathic Cystinosis