NCT00474448

Completed

The Health-Related Quality of Life in Patients With Heredita...

University of British Columbia Source

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Other study identifiers

Sponsor study identifier

H07-00457

Study Type

observational

Estimated enrollment

200

Locations

1 country

Sites

1

Timeline

Study Start

May 2007

Date type not reported

This date has not been verified as actual or estimated.

Primary Completion

February 2014

Actual (reported)

Study Completion

February 2014

Actual (reported)

Brief Summary

The purpose of this study is to assess the health-related quality of life of subjects who have Hereditary Multiple Exostoses and to develop a disease specific quality of life survey. The investigators hypothesize that there are a wide range of quality of life experiences for patients with this syndrome.

Registry Overview

Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.

Recruitment status: completed
Estimated enrollment: 200 participants
Study completion date: February 2014
Actual (reported)
Listed locations: 1 countries · 1 sites

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.

Study Start
May 2007
Date type not reported
This date has not been verified as actual or estimated.
First Submitted
May 15, 2007
Actual (reported)
First Posted
May 17, 2007
Actual (reported)
Primary Completion
February 2014
Actual (reported)
Study Completion
February 2014
Actual (reported)

Last Updated: May 18, 2022
Status Verified: May 2017
Last Update Submitted: May 16, 2022

Conditions

Exostoses, Multiple Hereditary

Keywords

Hereditary Multiple ExostosesSurveyQuality of LifeHereditary Multiple Exostoses,also known as Multiple Hereditary Exostoses,also known as Hereditary Multiple Osteochondromas

Outcome Measures

Primary Outcomes (1)

SF-36 score for adults and CHQ PF-50 for children
No time frame

Eligibility Criteria

Sexall

Healthy VolunteersYes

Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

Sampling MethodNon-Probability Sample

Study Population

Adult patients or parents of child patients in British Columbia.

You may qualify if:

Must be diagnosed with Hereditary Multiple Exostoses

Sponsors & Collaborators

MHE Coalition
Type not reportedcollaborator
University of British Columbia
Otherlead

Study Sites (1)

BC Children's Hospital

Vancouver, British Columbia, V6H 3V4, Canada

MeSH Terms

Conditions

Exostoses, Multiple Hereditary

Condition Hierarchy (Ancestors)

OsteochondromatosisOsteochondromaNeoplasms, Bone TissueNeoplasms, Connective TissueNeoplasms, Connective and Soft TissueNeoplasms by Histologic TypeNeoplasmsNeoplastic Syndromes, HereditaryOsteochondrodysplasiasBone Diseases, DevelopmentalBone DiseasesMusculoskeletal DiseasesExostosesHyperostosis

Study Officials

Christine Alvarez, MD
University of British Columbia
PRINCIPAL INVESTIGATOR

Study Design

Study Type: observational
Observational Model: CASE ONLY
Time Perspective: OTHER
Sponsor Type: OTHER
Responsible Party: PRINCIPAL INVESTIGATOR
PI Title: Principle Investigator

Study Record Dates

First Submitted

May 15, 2007

First Posted

May 17, 2007

Study Start

May 2007

Date type not reported

This date has not been verified as actual or estimated.

Primary Completion

February 2014

Actual (reported)

NCT03442985

An Efficacy and Safety Study of Palovarotene for the Treatment of MO

Phase 2Terminated

NCT04133285

Registry of Multiple Osteochondromas

Recruiting

NCT07839637

Survey on Multiple Osteochondromas and Enchondromatoses During the Transition From Paediatric Care to Adult Care

Completed

NCT03557567

NGS Strategy Effectiveness in Molecular Diagnosis

Completed

NCT06397443

Ready to Sail: Evaluating Sailing's Feasibility as Ergotherapy

Not ApplicableCompleted

Adult patients or parents of child patients

Contact the study team to confirm eligibility.

Genetic Diseases, Inborn

Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Completion

February 2014

Actual (reported)

Last Updated

May 18, 2022

Record last verified: 2017-05

Source record

Download the complete ClinicalTrials.gov record imported by Syfrah, including fields not shown in this page. The registry may contain a newer revision.

Source: ClinicalTrials.gov.

JSON downloads include source attribution and retrieval details alongside the unchanged original record or the separately normalized values.

Registry identifier: NCT00474448
Data provider: ClinicalTrials.gov
Source updated: 2022-05-18
Normalization version: ctgov-legacy-1

Open registry record

Source retrieved: 2026-10-25 22:23:54 UTC

Locations

CA(1)

Brief Summary

Registry Overview

Trial Relationships

Related Scientific Literature

Study Timeline

Study Start

First Submitted

First Posted

Primary Completion

Study Completion

Conditions

Keywords

Outcome Measures

Primary Outcomes (1)

Eligibility Criteria

You may qualify if:

Sponsors & Collaborators

Study Sites (1)

MeSH Terms

Conditions

Condition Hierarchy (Ancestors)

Study Officials

Study Design

Study Record Dates

Source record

Locations