NCT00474448

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.

Trial Health

87
On Track

Trial Health Score

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

Enrollment
200

participants targeted

Target at P75+ for all trials

Timeline
Completed

Started May 2007

Longer than P75 for all trials

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

May 1, 2007

Completed
14 days until next milestone

First Submitted

Initial submission to the registry

May 15, 2007

Completed
2 days until next milestone

First Posted

Study publicly available on registry

May 17, 2007

Completed
6.7 years until next milestone

Primary Completion

Last participant's last visit for primary outcome

February 1, 2014

Completed
Same day until next milestone

Study Completion

Last participant's last visit for all outcomes

February 1, 2014

Completed
Last Updated

May 18, 2022

Status Verified

May 1, 2017

Enrollment Period

6.8 years

First QC Date

May 15, 2007

Last Update Submit

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
  • Adult patients or parents of child patients

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

BC Children's Hospital

Vancouver, British Columbia, V6H 3V4, Canada

Location

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 DiseasesExostosesHyperostosisGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and Abnormalities

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 1, 2007

Primary Completion

February 1, 2014

Study Completion

February 1, 2014

Last Updated

May 18, 2022

Record last verified: 2017-05

Locations

CA(1)