COBra Study

Research Study: COBra (Patient Reported Core Outcomes in Brain Tumour Trials) aims to understand the experiences of people affected by glioma.

[COBra Study @StudyCobra]

@brainstrust is working with researchers who have developed a questionnaire for people with glioma and their carers - if you meet the criteria (see below) please do consider taking part. The questionnaire can be accessed below.

[Marie Curie Research Centre, Cardiff @MCPCRCCardiff]

Well done @BaddeleyElin presenting qualitative data from the @StudyCobra today at the #EANO2023 focusing on understanding the holistic needs of patients with glioma and their caregivers. @DPMRes @CUmedicengage @BrainTumourOrg
@annmarienelson0 @CPROR_UoB
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[Marie Curie Research Centre, Cardiff @MCPCRCCardiff]

Great to see Elin Baddeley and @stephsivell represent the centre at the #EANO2023 to help present work from the @StudyCobra, led by Prof. Anthony Byrne, a mixed methods study to develop a core outcome set for use in #glioma trials in the UK. https://t.co/wOV3UJMuO5

[COBra Study @StudyCobra]

We are back again at #EANO2023 today. Find our poster on understanding the holistic needs of people living with glioma and their caregivers all day today by @BaddeleyElin @stephsivell and colleagues from @MCPCRCCardiff and @CPROR_UoB.
@EANOassociation @BrainTumourOrg

[COBra Study @StudyCobra]

See the full paper 'Development of a core outcome set for use in adult primary glioma phase III interventional trials: A mixed methods study' https://t.co/kYG3evCuiD

[COBra Study @StudyCobra]

Members of the COBra team are at #EANO2023! Find the final core outcome set results poster all day today by Ameeta Retzer and colleagues @CPROR_UoB @MCPCRCCardiff. Come visit @BaddeleyElin and @stephsivell by the poster between 6-7.30 CEST @EANOassociation @BrainTumourOrg

[Marie Curie Research Centre, Cardiff @MCPCRCCardiff]

Tonight we launch our new work programme! 🚀 This follows the successful refunding of our Marie Curie core programme award for a further 5 years. Watch this space for updates from the event.😍@DPMRes @Cardiffuninews @MarieCurieCymru @annmarienelson0 @MarieCurieEOLC

[Public Involvement in Research Impact Toolkit @PIRIToolkit]

📢GET IT NOW! @PIRIToolkit Free download at: https://t.co/VZLIlFHD7T
@MCPCRCCardiff @theWCRC @CUmedicengage @DPMRes @NIHRinvolvement @ResearchWales @annmarienelson0 @MarieCurieEOLC

[Public Involvement in Research Impact Toolkit @PIRIToolkit]

The countdown has begun! join us for the @PIRIToolkit launch today at 1.30. Register free at: https://t.co/stPwq7o7GN

[Francesca Mazzaschi @FMazzaschi]

In support of #BrainTumourAwarenessWeek here's a quick showcase of some of the brain tumour work that has been done @MCPCRCCardiff 🧠

@StudyCobra @SilviaGoss1 @BaddeleyElin @annmarienelson0 @stephsivell

[MLongo @MirellaLongo18]

It is brain tumor awareness week. This poster (paper coming) from one of our MS students is about the role played by speech and language therapists @RachelEvansMK @cudippallmed @annmarienelson0 @FionaRawlinson1 @stephsivell @DPMRes @MarieCurieEOLC @MCPCRCCardiff @BrainCancerAwa

[Marie Curie EOLC @MarieCurieEOLC]

📣Still time......
an important chance to shape the future of GP practice and end of life care. We are looking for your feedback whether you have ever taken part in the Daffodil Standards programme or not. Thank you.
Find out more➡️ https://t.co/9vWguU8Y1M

[MLongo @MirellaLongo18]

Wonderful talk from Alisha @alishaannnewman and Robert McAllister (PPI) to start the NIHR Centre for Engagement and Dissemination event series @MCPCRCCardiff @annmarienelson0 @DPMRes @stephsivell @SilviaGoss1 @EmilyHarrop10 @kathyseddon @Daniella_M_H @DrMichelleEdwar @SimonNoble

[Marie Curie Research Centre, Cardiff @MCPCRCCardiff]

Missing data pose risks to research findings. See new guidance on how to reduce, handle and report missing data in palliative and end of life care trials here: https://t.co/1NJoKdTelU @annmarienelson0 @SimonNoble

[Tessa Jowell Brain Cancer Mission @TJBCMission]

Interested in glioma patient-reported outcomes?
@StudyCobra are seeking clinicians, researchers, policymakers, third sector participants & patients/caregivers to complete a survey to help develop a standard way of reporting patient outcomes➡️email Elin: [email protected]

[COBra Study @StudyCobra]

We are recruiting! If you, or a loved one, has been diagnosed with a glioma brain tumour, we want to know your views. Please get in touch to find out more - [email protected] @BrainTumourOrg @brainstrust @MCPCRCCardiff @CPROR_UoB

[COBra Study @StudyCobra]

We are recruiting experts to a 2-round survey to develop a core outcome set for glioma interventional trials. Have your say now! If you meet the criteria, get in touch [email protected]
@MCPCRCCardiff @CPROR_UoB
#glioma #braintumour

[Victoria Shepherd @VickyLShepherd]

We are looking for people #Wales with problems with memory or understanding (e.g people living with dementia, learning disabilities or have been critically ill) & carers, to help us develop a tool to ensure research is more inclusive of these groups @ResearchWales @CTRCardiffUni

[Cancer Care Map @CancerCareMap]

Each year, over 12,000 people in the UK are diagnosed with brain tumours.

In recognition of #BrainTumourAwareness Month, we shine a light on some of the incredible organisations offering help and support to those living with a brain tumour in the UK.

https://t.co/OBdzzEdqWh

[brainstrust @brainstrust]

This #BrainTumourAwarenessMonth I want the world to know...

"My WHOLE life has changed, not just me!"

Please retweet to amplify the experiences of those who have heard the words 'you have a brain tumour' and help create a more supportive society #BTAM2022 #PeopleNotPatients