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Chordoma Family Study

NCT00410670 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 55

Last updated 2019-12-17

No results posted yet for this study

Summary

This pilot study, conducted by the National Cancer Institute and the Massachusetts General Hospital, will investigate genetic factors that contribute to the development of chordoma in people from some families. Chordoma is a very rare, potentially fatal, slow-growing bone tumor derived from remnants of embryonic material. This study will determine the feasibility of conducting a larger study aimed at identifying new families with multiple members affected by chordoma to study the genetic basis of the disease.

English-speaking persons diagnosed with chordoma when they were 18 years of age or younger and who were treated at the Massachusetts General Hospital Department of Radiation Oncology between 1988 and the end of the study period may be eligible for this protocol. The age range of these patients is currently from about 5 months to 33 years.

Patients (or parents of minor patients) will be mailed a packet with instructions for completing the following procedures at home:

* Provide permission for researchers to obtain medical records relating to the patient's chordoma and any other serious medical conditions he or she has had, and to obtain a piece of the patient's stored tumor tissue.
* Complete a questionnaire about the patient's close blood relatives, including parents, brothers, sisters, and any more distant relatives who have had chordoma or a cancer or tumor which started in the brain or spine. The questionnaire will also include demographic information, such as education, marital status, ethnicity, religion, and household income.
* Collect two samples of cheek cells (only from patients 6 years and older). Patients' packets include instructions and materials for collecting the cells. Parents of children 6 to 9 years old will collect cells from the child's mouth using a sterile soft-bristled brush contained in a tube. They will brush the inside of the child's cheek with the brush for about 30 seconds and then place the brush back in the tube. They will repeat this procedure with a second brush. Patients 10 years of age and older will rinse their mouth for about 45 seconds with a mouthwash provided in their packets and then spit the mouthwash into a collection container. They will repeat the procedure several hours later.

All participants will return the signed permission forms, questionnaires, and cheek cell samples to the researchers in a pre-addressed stamped envelope, which is also provided in the packet.

...

Conditions

  • Chordoma

Sponsors & Collaborators

  • National Cancer Institute (NCI)

    lead NIH

Principal Investigators

  • Alisa M Goldstein, Ph.D. · National Cancer Institute (NCI)

Eligibility

Min Age
4 Years
Max Age
75 Years
Sex
ALL
Healthy Volunteers
No

Timeline & Regulatory

Start
2003-08-01
Completion
2017-12-29

Countries

  • United States

Study Locations

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Read the full study record

This page highlights key information. For complete eligibility criteria, study locations, investigator contacts, and the full protocol, visit the original record on ClinicalTrials.gov.

View NCT00410670 on ClinicalTrials.gov