Outcomes and Risk in People With Ependymoma
Ependymoma is a rare type of primary brain or spine tumor. That means that it starts in the brain or spine. These tumors affect both children and adults. Researchers want to study a large group of people with this kind of tumor. They want to learn more about the tumors, including the risk factors related to how they develop in adults.
To collect health and gene data to learn about what changes are associated with an ependymoma, to eventually screen for these changes or target the genes in treatment.
People 18 years and older who have an ependymoma tumor
Participants will be recruited from a research website and a previous study.
Participants will take an online study. It is called the Adult Ependymoma Outcomes Survey. It should take about 15 20 minutes. Participants will be asked for demographic data and about their disease history.
Participants will take another online study. It is called the Adult Ependymoma Risk Survey. It should take about 50 minutes. Participants will be asked about:
Personal medical history
Family medical history
Participants who have physical problems can have help with the surveys and forms.
Participants will get a kit in the mail with the materials needed to collect saliva. Participants will ship the sample to the study team in a prepaid envelope.
If the sample is not usable, participants may be asked to give another one.
|Study Design:||Observational Model: Cohort
Time Perspective: Prospective
|Official Title:||Exploring Outcomes and Risk in Patients With Ependymoma|
- self-reported data on treatment, symptoms, functional status, andquality of life for adult patients with ependymoma [ Time Frame: completion of study ]
- To evaluate the relationship between health status and diseaseand treatment characteristics [ Time Frame: completion of study ]
- To evaluate self-reported clinical and demographic risk factors inadult patients in the ependymoma patient population. [ Time Frame: completion of study ]
- To explore genomic susceptibility in patients with ependymoma. [ Time Frame: completion of study ]
|Anticipated Study Start Date:||August 22, 2017|
|Estimated Study Completion Date:||February 1, 2019|
|Estimated Primary Completion Date:||February 1, 2019 (Final data collection date for primary outcome measure)|
participants greater than or equal to 18 years of age who self-identify as being diagnosed with an ependymoma.
Show Detailed Description
Please refer to this study by its ClinicalTrials.gov identifier: NCT03251989
|Contact: Alvina Acquaye||(240) firstname.lastname@example.org|
|United States, Maryland|
|National Cancer Institute (NCI)||Recruiting|
|Bethesda, Maryland, United States, 20892|
|Principal Investigator:||Terri S Armstrong, C.R.N.P.||National Cancer Institute (NCI)|