None listed
Conditions
Brief summary
The aim of this study is to establish a comprehensive registry to capture the lived experiences of patients with brain tumours. Who is it for? You may be eligible for this study if you are a male or female age 18 or older, have a brain tumour diagnosis, including but not limited to glioma, meningioma, brain metastases and rare tumours including medulloblastoma and ependymoma. Study details Participants will be asked to self register to the BEACON portal and complete questionnaires every 3 months regarding 1) Diagnosis and treatment, 2) Home supports (3) Quality of life. All data entered will be available to the participant to download after each survey is completed. It is anticipated that the surveys will take between 20 to 30 minutes to complete each time. It is hoped that BEACON will assist in determining the impact of being diagnosed with a brain tumour, from the time of diagnosis through treatment, and recurrence or progression events, and survivorship.
Interventions
To enroll in this study participants must self register to the BEACON portal and complete questionnaires every 3 months on their 1) Diagnosis and treatment, 2)Home supports (3) Quality of life. All data entered will be available to the participant to download after each survey is completed. It is anticipated that the surveys will take between 20 to 30 minutes to complete each time. Access to the internet will be required to complete the questionnaires, either by using a smart phone or a computer
To enroll in this study participants must self register to the BEACON portal and complete questionnaires every 3 months on their 1) Diagnosis and treatment, 2)Home supports (3) Quality of life. All data entered will be available to the participant to download after each survey is completed. It is anticipated that the surveys will take between 20 to 30 minutes to complete each time. Access to the internet will be required to complete the questionnaires, either by using a smart phone or a computer at home at a time convenient to the participant. The follow-up period is 5 years.
Sponsors
The Walter and Eliza Hall Institute of Medical Research (WEHI)
Eligibility
Sex/Gender
All
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
1. Able to provide informed, voluntary consent in English. 2. Adults aged 18 years and/or above. 3. A brain tumour diagnosis, including but not limited to glioma, meningioma, brain metastases and rare tumours including medulloblastoma and ependymoma. 4. Able to complete online questionnaires with or without the use of a proxy in English.
Exclusion criteria
Participants will be excluded if they meet any of the following criteria: 1. Participants who do not have a diagnosis of brain tumour or high clinical suspicion of such 2. Participants who do not have consistent access to a computer/smart phone and internet 3. Participants who are not proficient in reading and writing English 4. Significant cognitive impairment
Outcome results
None listed