NCT01031901

Brief Summary

This study is a prospective, randomized, double-blind, placebo-controlled evaluation of the safety of a topically applied formulation of rapamycin to cutaneous fibromatous lesions in subjects with Tuberous Sclerosis Complex (TSC) and Neurofibromatosis I (NF1). Subjects will apply either a Polyvinylidene fluoride (PVDF) coating (Skincerity) containing rapamycin or the PVDF coating alone nightly to fibromatous lesions for a duration of six months. The primary goal of this study is to evaluate the safety of the topical product in patients with TSC and NF1. The secondary goal of this study is to evaluate the effectiveness of the topical product for treatment of cutaneous fibromatous lesions.

Trial Health

87
On Track

Trial Health Score

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

Enrollment
52

participants targeted

Target at P50-P75 for phase_1

Timeline
Completed

Started Dec 2009

Geographic Reach
1 country

1 active site

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

Study Start

First participant enrolled

December 1, 2009

Completed
9 days until next milestone

First Submitted

Initial submission to the registry

December 10, 2009

Completed
5 days until next milestone

First Posted

Study publicly available on registry

December 15, 2009

Completed
1.1 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

February 1, 2011

Completed
4 months until next milestone

Study Completion

Last participant's last visit for all outcomes

June 1, 2011

Completed
Last Updated

February 27, 2012

Status Verified

February 1, 2012

Enrollment Period

1.2 years

First QC Date

December 10, 2009

Last Update Submit

February 24, 2012

Conditions

Keywords

Tuberous SclerosisNeurofibromatosesAngiofibromaNeurofibromaSirolimus

Outcome Measures

Primary Outcomes (4)

  • Rapamycin level

    6 months

  • Complete blood count

    6 months

  • Total cholesterol

    6 months

  • Dermatologic sensitivity at site of application (pain, erythema, edema, pruritis)

    6 months

Secondary Outcomes (1)

  • Reduction in lesion size and appearance

    6 months

Study Arms (6)

TSC Placebo Arm

PLACEBO COMPARATOR

TSC subjects will apply a study product containing polyvinylidene fluoride coating alone to facial angiofibromas

Drug: Skincerity

TSC 1% Arm

EXPERIMENTAL

TSC subjects will apply a study product containing polyvinylidene fluoride coating plus 1 mg of sirolimus/rapamycin to facial angiofibromas

Drug: Skincerity plus sirolimus/rapamycin

TSC 5% Arm

EXPERIMENTAL

TSC subjects will apply a study product containing polyvinylidene fluoride coating plus 5 mg of sirolimus/rapamycin to facial angiofibromas

Drug: Skinercity plus sirolimus/rapamycin

NF1 Placebo Arm

PLACEBO COMPARATOR

NF1 subjects will apply a study product containing polyvinylidene fluoride coating alone to cutaneous neurofibromas

Drug: Skincerity

NF1 1% Arm

EXPERIMENTAL

NF1 subjects will apply a study product containing polyvinylidene fluoride coating plus 1 mg of sirolimus/rapamycin to cutaneous neurofibromas

Drug: Skincerity plus sirolimus/rapamycin

NF1 5% Arm

EXPERIMENTAL

NF1 subjects will apply a study product containing polyvinylidene fluoride coating plus 5 mg of sirolimus/rapamycin to cutaneous neurofibromas

Drug: Skinercity plus sirolimus/rapamycin

Interventions

Study subjects will apply a study product containing polyvinylidene fluoride coating alone to either facial angiofibromas or cutaneous neurofibromas

NF1 Placebo ArmTSC Placebo Arm

Study subjects will apply a study product containing polyvinylidene fluoride coating plus 1 mg of sirolimus/rapamycin to either facial angiofibromas or cutaneous neurofibromas

NF1 1% ArmTSC 1% Arm

Study subjects will apply a study product containing polyvinylidene fluoride coating plus 5 mg of sirolimus/rapamycin to either facial angiofibromas or cutaneous neurofibromas

NF1 5% ArmTSC 5% Arm

Eligibility Criteria

Age13 Years+
Sexall
Healthy VolunteersYes
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Subject is willing and able to comply with all trial requirements
  • Subject is male or female and over 13 years of age
  • Subject has a diagnosis of either TSC or NF1 and has visible fibromatous lesions (angiofibromas or neurofibromas)
  • Female subjects of child-bearing potential must not be pregnant and must agree to use appropriate contraceptive methods for the duration of the trial

You may not qualify if:

  • Subject is currently receiving therapy with rapamycin or sirolimus
  • Subject is receiving any form of immunosuppression or has previously experienced immune dysfunction
  • Subject is currently participating in or has participated within the last 30 days in any clinical trial involving an investigational drug
  • Subject has a known hypersensitivity to either the PVDF coating (Skincerity®) or rapamycin
  • Subject is a pregnant or nursing female

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

The University of Texas Health Science Center

Houston, Texas, 77030, United States

Location

Related Publications (1)

  • Koenig MK, Hebert AA, Roberson J, Samuels J, Slopis J, Woerner A, Northrup H. Topical rapamycin therapy to alleviate the cutaneous manifestations of tuberous sclerosis complex: a double-blind, randomized, controlled trial to evaluate the safety and efficacy of topically applied rapamycin. Drugs R D. 2012 Sep 1;12(3):121-6. doi: 10.2165/11634580-000000000-00000.

MeSH Terms

Conditions

Tuberous SclerosisNeurofibromatosesAngiofibromaNeurofibroma

Interventions

Sirolimus

Condition Hierarchy (Ancestors)

HamartomaNeoplasmsNeoplasms, Multiple PrimaryNeoplastic Syndromes, HereditaryMalformations of Cortical Development, Group IMalformations of Cortical DevelopmentNervous System MalformationsNervous System DiseasesNeurocutaneous SyndromesHeredodegenerative Disorders, Nervous SystemNeurodegenerative DiseasesCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesGenetic Diseases, InbornNerve Sheath NeoplasmsNeoplasms, Nerve TissueNeoplasms by Histologic TypeNeoplasms, Vascular TissuePeripheral Nervous System NeoplasmsNervous System NeoplasmsPeripheral Nervous System DiseasesNeuromuscular Diseases

Intervention Hierarchy (Ancestors)

MacrolidesLactonesOrganic Chemicals

Study Officials

  • Mary Kay Koenig, MD

    The University of Texas Health Science Center, Houston

    PRINCIPAL INVESTIGATOR
  • Hope Northrup, MD

    The University of Texas Health Science Center, Houston

    PRINCIPAL INVESTIGATOR

Study Design

Study Type
interventional
Phase
phase 1
Allocation
RANDOMIZED
Masking
QUADRUPLE
Who Masked
PARTICIPANT, CARE PROVIDER, INVESTIGATOR, OUTCOMES ASSESSOR
Purpose
TREATMENT
Intervention Model
PARALLEL
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Assistant Professor, Pediatrics-Neurology

Study Record Dates

First Submitted

December 10, 2009

First Posted

December 15, 2009

Study Start

December 1, 2009

Primary Completion

February 1, 2011

Study Completion

June 1, 2011

Last Updated

February 27, 2012

Record last verified: 2012-02

Locations