NCT01434745

Brief Summary

The purpose of this study is to determine if simvastatin improves development and behavior in patients with Smith Lemli-Opitz syndrome (SLOS) receiving dietary cholesterol supplementation.

Trial Health

57
Monitor

Trial Health Score

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

Enrollment
1

participants targeted

Target at below P25 for not_applicable

Timeline
Completed

Started Sep 2011

Typical duration for not_applicable

Geographic Reach
1 country

1 active site

Status
terminated

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

Trial Relationships

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Study Timeline

Key milestones and dates

Study Start

First participant enrolled

September 1, 2011

Completed
6 days until next milestone

First Submitted

Initial submission to the registry

September 7, 2011

Completed
8 days until next milestone

First Posted

Study publicly available on registry

September 15, 2011

Completed
3 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

October 1, 2014

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

October 1, 2014

Completed
5 years until next milestone

Results Posted

Study results publicly available

October 1, 2019

Completed
Last Updated

October 1, 2019

Status Verified

September 1, 2019

Enrollment Period

3.1 years

First QC Date

September 7, 2011

Results QC Date

September 12, 2019

Last Update Submit

September 12, 2019

Conditions

Keywords

SLOSCholesterol SupplementationSimvastatin

Outcome Measures

Primary Outcomes (1)

  • Development Quotient (DQ)

    neurocognitive assessment measured with Mullen Scales of Learning

    through study completion, an average of 2 per year

Secondary Outcomes (6)

  • Whole Body Cholesterol Pool Size, Synthesis & Absorption Using Stable Isotope Testing

    end of treatment, an average of 1 per year

  • Plasma Marker of Sterol Metabolism

    through study completion, an average of 2 per year

  • ADC

    end of treatment, an average of 1 per year

  • MVA

    through study completion, an average of 2 per year

  • MRS Lipids

    end of treatment, an average of 1 per year

  • +1 more secondary outcomes

Study Arms (2)

Placebo

PLACEBO COMPARATOR

placebo

Dietary Supplement: Lactose

Simvastatin

EXPERIMENTAL

0.5 mg/kg body weight/day

Drug: Simvastatin

Interventions

Simvastatin will be administered as a powder mixed with lactose at the dose of 0.5 mg/kg/day

Also known as: Zocor, Flolipid
Simvastatin
LactoseDIETARY_SUPPLEMENT

Lactose will be administered in a capsule formula.

Placebo

Eligibility Criteria

Age1 Year - 89 Years
Sexall
Healthy VolunteersNo
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Male or female over 1 years old
  • Subject has confirmed diagnosis of Smith-Lemli-Opitz Syndrome
  • Subject is currently receiving cholesterol supplementation

You may not qualify if:

  • Subjects too ill to travel to the study site
  • Subjects who are unable to safely undergo study procedures
  • Pregnant women

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

Oregon Health and Science University

Portland, Oregon, 97239, United States

Location

MeSH Terms

Conditions

Smith-Lemli-Opitz Syndrome

Interventions

SimvastatinLactose

Condition Hierarchy (Ancestors)

Abnormalities, MultipleCongenital AbnormalitiesCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesLipid Metabolism, Inborn ErrorsMetabolism, Inborn ErrorsGenetic Diseases, InbornSteroid Metabolism, Inborn ErrorsDyslipidemiasLipid Metabolism DisordersMetabolic DiseasesNutritional and Metabolic Diseases

Intervention Hierarchy (Ancestors)

LovastatinNaphthalenesPolycyclic Aromatic HydrocarbonsHydrocarbons, AromaticHydrocarbons, CyclicHydrocarbonsOrganic ChemicalsPolycyclic CompoundsDisaccharidesOligosaccharidesPolysaccharidesCarbohydratesSugars

Limitations and Caveats

Analyses were not completed and will never be completed due to insufficient funding

Results Point of Contact

Title
Dr. jean-Baptiste Roullet
Organization
Washington State University

Study Officials

  • Jean-Baptiste Roullet, PhD

    Washington State University

    PRINCIPAL INVESTIGATOR

Publication Agreements

PI is Sponsor Employee
No
Restrictive Agreement
No

Study Design

Study Type
interventional
Phase
not applicable
Allocation
RANDOMIZED
Masking
SINGLE
Who Masked
PARTICIPANT
Purpose
TREATMENT
Intervention Model
CROSSOVER
Sponsor Type
OTHER
Responsible Party
PRINCIPAL INVESTIGATOR
PI Title
Clinical Professor

Study Record Dates

First Submitted

September 7, 2011

First Posted

September 15, 2011

Study Start

September 1, 2011

Primary Completion

October 1, 2014

Study Completion

October 1, 2014

Last Updated

October 1, 2019

Results First Posted

October 1, 2019

Record last verified: 2019-09

Locations