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CompletedNCT03663855Updated Dec 17, 2021Results posted

Effect of Increasing Doses of Tiopronin on Cystine Capacity in Patients With Cystinuria

A Phase 2 interventional study of Tiopronin in Cystinuria, sponsored by NYU Langone Health. Completed at 1 site in United States. Open to participants aged 18 Years to 80 Years. Per ClinicalTrials.gov, last updated 2021-12-17.

Sponsored by NYU Langone Health · Phase 2, Interventional, and Treatment

Phase
Phase 2
Study type
Interventional
Enrollment
10
Allocation
Not applicable
Ages
18 Years to 80 Years
Sex
All
01

Study summary

The purpose of this study is to determine the minimum effective dose of the cysteine binding thiol drug (CBTD) Tiopronin on urine cystine capacity, which is a measure of cystine solubility in the urine, in patients with cystinuria to evaluate the effect of escalating doses of cystine binding thiol drugs on the cystine capacity of the urine. The overall goal will be to help guide therapy and ultimately minimize unnecessary side effects caused by larger dosages.

Cystinuria is a rare genetic disease that can lead to significant morbidity in affected patients due to the recurrent nature of the disease. This study will follow the levels of urine cystine capacity in order to help guide treatment and to use lower than usually prescribed Tiopronin doses to decrease the potential side effects while maintaining therapeutic benefit. This will increase adherence with the medications by decreasing the burden of the large number of pills that need to be taken daily.

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Conditions studied

  • Cystinuria

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03

Who can participate

Ages eligible
18 Years to 80 Years
Sexes eligible
All
Accepts healthy volunteers
No

Inclusion criteria

  • Patients with a confirmed laboratory diagnosis of cystinuria who meet the following criteria: (1) stone analysis demonstrating cystine as a component, or (2) increased urinary cystine excretion (>250mg/24hrs in adults).
  • A medical regimen that includes Tiopronin.
  • Willing to use a medically accepted form of birth control, if female and of child bearing- potential
  • Ability to reliably urinate in a collection vessel and measure urine volume.
  • Ability to give informed consent.
  • Documentation of a stable complete blood count (CBC) and urinalysis (UA) in the six month period prior to the date of enrollment.
  • Enrollment in Rare Kidney Stone Consortium (RKSC) Protocol 6401 (Cystinuria Registry)

Exclusion criteria

Exclusion Criteria:

  • Women who are pregnant, breastfeeding, or trying to become pregnant
  • Patients with renal colic
  • Patients who are scheduled to undergo a surgical procedure
  • Inability to give informed consent
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Study design

Phase
Phase 2
Primary purpose
Treatment
Allocation
Not applicable
Intervention model
Single group
Masking
None (open label)
Enrollment
10 participants (actual)

Study arms

  • Experimental
    Cystinuria Patients

    Drug: Tiopronin

Interventions

  • DrugTiopronin

    Phase 1: No medication, Phase 2: 500mg PO daily x 7 days (total 500mg), Phase 3: 500mg PO BID x 7 days (total 1g), Phase 4: 1g PO BID x 7 days (total 2g)

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What researchers measure

Primary outcomes

  1. Change in Cystine Capacity From Baseline

    This measure reflects the ability of urine to take up more cystine

    Time frame: Baseline; Day 7

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Results

Posted Dec 17, 2021

Participant flow

Participant flow — Overall Study
MilestoneCystinuria Patients
Started10
Completed10
Not completed0

Outcome measures

PrimaryChange in Cystine Capacity From Baseline

This measure reflects the ability of urine to take up more cystine

Time frame:
Baseline; Day 7
Reported as:
Mean · mg/L
Change in Cystine Capacity From Baseline
mg/LCystinuria Patients
Phase 1-63.6 ± 24.8
Phase 276 ± 18.1
Phase 353.4 ± 17.7
Phase 4103.1 ± 27.4

Adverse events

Collected over 30 days. Non-serious events are listed at a 0% frequency threshold.

Adverse event summary by group
GroupDeathsSeriousOther
Cystinuria Patients0/10 (0%)0/10 (0%)0/10 (0%)

Baseline characteristics

Multiple efforts to contact the PI/study team for the relevant data have failed. Therefore, per intervention data are not available to be reported for this assessment.

Age, Continuous
Age, Continuous(years)Cystinuria Patients
Mean45.3 ± 15.42
Sex: Female, Male
Sex: Female, Male(Participants)Cystinuria Patients
Female5
Male5
Race (NIH/OMB)
Race (NIH/OMB)(Participants)Cystinuria Patients
American Indian or Alaska Native0
Asian1
Native Hawaiian or Other Pacific Islander0
Black or African American0
White9
More than one race0
Unknown or Not Reported0
Region of Enrollment
Region of Enrollment(participants)Cystinuria Patients
United States10
07

Study locations

1 site
  • New York University School of Medicine
    New York, New York 10016, United States
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References and documents

Study documents

  • Protocol and statistical analysis plan · May 15, 2019

Documents are hosted by the registry — open the source record to download them.

Individual participant data

Plan to share: Yes — All of the individual participant data collected during the trial, after deidentification. Researchers who provide a methodologically sound proposal.

Supporting information: Csr, Analytic code

09

Registry details

Key details

Study ID
NCT03663855
Lead sponsor
NYU Langone Health
Responsible party
Sponsor
First posted
Sep 10, 2018
Start date
Nov 1, 2018
Primary completion
Sep 10, 2019
Completion
Sep 10, 2019
Results posted
Dec 17, 2021
Last update
Dec 17, 2021

Study contacts

David Goldfarb, MD
principal investigator · NYU Langone Health

Oversight

Data monitoring committee
Yes
FDA-regulated drug
Yes
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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This study is completed, as verified in Nov 2021. You cannot join it, but the record below documents what was studied.

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