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NCT00341627 · ClinicalTrials.gov registry record
Genetic Aspects of Chordoma: A Collaboration With SEER Registries to Identify Chordoma Families
A clinical trial, sponsored by National Cancer Institute (NCI).
- Completed
- Registry status
- 56
- Enrollment target
NCT00341627: Completed study, sponsored by National Cancer Institute (NCI).
NCT00341627 is a clinical trial that has completed, run by National Cancer Institute (NCI). The registered enrollment target is 56 participants. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT00341627 has completed, sponsored by National Cancer Institute (NCI).
- COMPLETED
- Registry status
- 56 participants
- Enrollment target
Study Summary
Chordoma is an uncommon (400 case/year in the U.S.) and potentially fatal bone tumor derived from remnants of embryonic notochord. It occurs primarily in the axial skeleton and has a mean age at diagnosis of 55 years, with a range from early childhood to over 70 years. This tumor usually presents at an advanced stage and the associated mortality is high due to local destruction and distant metastases. Chordoma is rare in African-Americans and is typically sporadic; there are few reports of these tumors arising congenitally or within members of the same family. Recently, we have identified and studied one large family in which 10 relatives in three generations have chordoma; the inheritance pattern suggests transmission of a mutation in an autosomal dominant gene. Using information from this family, we have tentatively napped this gene to the long arm of chromosome 7. To confirm this finding, and to fine map and clone the gene, we need to study additional chordoma families. In an effort to identify such families, we have developed collaborations with four SEER registries covering the populations of Detroit, Los Angeles, Iowa, and New Mexico. Each registry will identify all chordoma cases diagnosed since 1988 and invite them (or the next of kin of deceased cases) to participate in our study. Through 1997, the registries have identified a total of 140 chordoma cases, 96 of whom are living. The registries will invite these patients (or their next of kin) to participate in the study. The study components include completion of a self-administered personal and family medical history questionnaire, retrieval of medical records and pathology reports pertaining to chordoma, and collection of paraffin-embedded chordoma tissue and buccal mucosal cells for genetic studies. NCI will carry out all the data collection activities for the study subjects identified through the Detroit registry. NCI will also conduct the buccal cell collection component of the study for all patients i
Primary Outcome
To determine if any unusual patterns of cancers other than chordoma or other medical conditions appear to cluster in families of the chordoma patients with the ultimate, long-term goal fine-mappingthe gene(s) involved in chordoma.
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 56 participants |
| Start Date | 1999-02-01 |
| Est. Completion | 2020-07-06 |
What the finished NCT00341627 record still lists
NCT00341627 is an observational study that tracks outcomes without assigning an intervention. The registry caps enrollment at 56 participants, a relatively small participant target.
The record links to 0 conditions, and to 0 interventions.
NCT00341627 does not publish any study locations in the registry export this page uses.
Frequently Asked Questions
What is clinical trial NCT00341627 about?
NCT00341627 is a clinical study titled "Genetic Aspects of Chordoma: A Collaboration With SEER Registries to Identify Chordoma Families". Chordoma is an uncommon (400 case/year in the U.S.) and potentially fatal bone tumor derived from remnants of embryonic notochord. It occurs primarily in the axial skeleton and has a mean age at diagnosis of 55 years, with a range from early childhood to over 70 years. This tumor usually presents at...
What is the current status of trial NCT00341627?
This trial is currently completed. The enrollment target is 56 participants. The study started on 1999-02-01. Estimated completion is 2020-07-06.
Who is sponsoring clinical trial NCT00341627?
This trial is sponsored by National Cancer Institute (NCI), which has 3,257 total clinical trials registered on ClinicalTrials.gov.
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