NCT04520750

Brief Summary

VALO-2 is a multicenter, open-label extension (OLE) study enrolling patients with genotyped keratin mutations KRT6A, KRT6B and KRT16 who were previously treated with investigational PTX-022 during the VALO study. The purpose of the OLE study is to investigate long term exposure to investigational PTX-022 and evaluate safety and efficacy data. A sub-study is included to evaluate safety and efficacy of patients with genotyped keratin mutations of KRT6C and KRT17 not previously treated with investigational PTX-022.

Trial Health

87
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
36

participants targeted

Target at below P25 for phase_3

Timeline
Completed

Started Sep 2020

Geographic Reach
1 country

4 active sites

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

March 6, 2020

Completed
6 months until next milestone

First Posted

Study publicly available on registry

August 20, 2020

Completed
12 days until next milestone

Study Start

First participant enrolled

September 1, 2020

Completed
10 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

June 30, 2021

Completed
1.5 years until next milestone

Study Completion

Last participant's last visit for all outcomes

December 15, 2022

Completed
Last Updated

August 29, 2024

Status Verified

August 1, 2024

Enrollment Period

10 months

First QC Date

March 6, 2020

Last Update Submit

August 28, 2024

Conditions

Outcome Measures

Primary Outcomes (4)

  • Incidence of Treatment-Emergent Adverse Events

    18 Months

  • Changes in vital sign measurements from baseline

    18 months

  • Changes in weight measurements from baseline

    18 months

  • Changes in clinical laboratory measurements from baseline

    18 months

Secondary Outcomes (6)

  • Patient Global Assessment of Activities Scale

    18 Months

  • Pain at its worst as assessed by NRS

    18 months

  • PROMIS Pain Interference Short 6A as assessed by likert scale

    18 months

  • PROMIS Physical Function as assessed by likert scale

    18 months

  • Patient Global Impression of Severity as assessed by likert scale

    18 months

  • +1 more secondary outcomes

Study Arms (1)

Open label treatment arm

EXPERIMENTAL

PTX-022 QTORIN

Drug: PTX-022

Interventions

Safety and Efficacy of PTX-022 in the Treatment of Adults with Pachyonychia Congenita

Open label treatment arm

Eligibility Criteria

Age18 Years+
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64), Older Adult (65+)

You may qualify if:

  • Adult patients 18 years or older,
  • Previously completed the VALO protocol, or VALO-2 K6C/17 sub-study, and received meaningful benefit from investigational PTX-022 as determined by the clinician.

You may not qualify if:

  • Any history of allergy or hypersensitivity to sirolimus, or sirolimus-like medications or to PTX-022

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (4)

Arizona Research Center

Phoenix, Arizona, 85053, United States

Location

Stanford University

Palo Alto, California, 94304, United States

Location

Minnesota Clinical Study Center

Fridley, Minnesota, 55432, United States

Location

University of Utah

Murray, Utah, 84107, United States

Location

MeSH Terms

Conditions

Pachyonychia Congenita

Condition Hierarchy (Ancestors)

Ectodermal DysplasiaAbnormalities, MultipleCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesSkin AbnormalitiesSkin Diseases, GeneticGenetic Diseases, InbornNail DiseasesSkin DiseasesSkin and Connective Tissue Diseases

Study Design

Study Type
interventional
Phase
phase 3
Allocation
NA
Masking
NONE
Purpose
TREATMENT
Intervention Model
SINGLE GROUP
Model Details: Open label
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

March 6, 2020

First Posted

August 20, 2020

Study Start

September 1, 2020

Primary Completion

June 30, 2021

Study Completion

December 15, 2022

Last Updated

August 29, 2024

Record last verified: 2024-08

Locations