Charity News Archives - Page 31 of 37 - Brainstrust, brain tumour charity

Posted 3rd July 2012

6 years old… £1.5 million raised for brain tumour patients

This month we’re 6! That’s not very old. But we definitely act our shoe size (11) not our age. So where has youthful enthusiasm married with your unfaltering support got us in 6 [...]

By brainstrust-dev

In Charity News

Posted 13th June 2012

brainstrust and SDBTT: More Research. More Support.

This is a story all about making making sure brainstrust’s support reaches more people, and ensuring more top-notch brain tumour research happens. Must say we’re excited about [...]

By brainstrust-dev

In Charity News

Posted 8th June 2012

Upcoming Brain Tumour Patient and Carer Information Days

On June 15th, Plymouth sees the next Brain Tumour Patient and Carer Information Day run by Samantha Dickson Brain Tumour Trust (SDBTT). It is free to attend for brain tumour patients and [...]

By brainstrust-dev

In Charity News

Posted 25th May 2012

brainstrust, Daryl, and… THE OLYMPIC TORCH!

Sorry for getting a bit shouty in the headline, but we’re a just a LITTLE bit excited this weekend as brainstrust hero and brain tumour battler Daryl ‘Daz’ Gittins is running [...]

By brainstrust-dev

In Charity News

Posted 22nd February 2012

New brainstrust brain tumour patient stories live…

We’ve often found that sharing experiences is a good way of coping. It’s also a super way to find out about new brain tumour support and brain tumour treatment options. “It’s been [...]

By brainstrust-dev

In Charity News

Posted 19th January 2012

Running to Remember – Kirsty Lovick

Kirsty Lovick began running to relax and clear her mind after her Dad, Richard, was diagnosed with a brain tumour. She has since raised over £2,800 to help brain tumour patients and carers across [...]

By brainstrust-dev

In Charity News

Posted 6th January 2012

Say ‘hello’ to the Little White Book.

Back at the BNOS meeting in June we helped the Association of Neuro Oncology Nurses with their part of the event. One of the things that came out of the meeting was a need for an offline resource [...]

By brainstrust-dev

In Charity News

Posted 6th December 2011

12000 brainstrust christmas cards have just arrived…

Please can you buy a pack? It means we’ll be able to see our office floor again; your order keeps the postman warm (twice); people love getting them; and it means we can do more cool stuff [...]

By brainstrust-dev

In Charity News

Posted 3rd November 2011

brainstrust Launches the Most Comprehensive Database of Brain Tumour Clinical Trials in the UK

Driven by patient demand for more information on current and upcoming clinical trials in the UK, brainstrust has launched an easy-to-use, up-to-date and comprehensive database which everyone can [...]

By brainstrust-dev

In Charity News

Posted 24th August 2011

Tavistock Community Football Club Ladies reach incredible fundraising goal.

A great day and such generous support shown by all for brainstrust. brainstrust has supported the Hammond family and they wanted to say thank you. Sue Hammond has shared with us details of their [...]

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Introduction

The Brain Tumour Data Dashboard lets you explore up -to-date, population level data about the brain tumours diagnosed in England between 2013 and 2015. Using the drop down menus on the left you can select different groups of patients to view in the charts below. In these charts the number of patients for every 100 diagnoses is displayed as images of people. Patients have been grouped by date of diagnosis, type of tumour, age, gender, and region in England.

For each group of patients you can explore the different routes to diagnosis, the proportion of those who received chemotherapy or radiotherapy, as well as the survival of the patients within each group. For more information about what these metrics mean please see the glossary.

How to use

Select the year of diagnosis using the drop down menu.
Select your patient group of interest from the four drop down menus in the following order:
1. Tumour group
2. Age at diagnosis
3. Region of England
4. Gender of patient
To view a second chart to compare different groups of patients, click the ‘compare’ button.The second chart will appear below the first chart.

*Note that the tool is best used on a laptop or tablet rather than a mobile phone*

Unavailable data

Some of the data in these charts is not available.There are two main reasons for this:

How the data has been grouped

If you cannot select a patient group from the drop down menus, the data is unavailable because of how the data has been organised.

Public Health England has grouped the data like a branching tree. The bottom of the tree contains all the patients with brain tumours, and then each branch divides the data by a certain characteristics, like age, or location of tumour. But the data is divided in an order, starting with location of the tumour (endocrine or brain), then by age, region, and gender. Age is at the start because it makes a bigger difference to survival rates and treatment rates than gender or region. Sometimes, after the data has been split by type of tumour and age, there is not enough data to be split again. This is because to protect patient confidentiality groups cannot contain less than 100 patients. Because some groups cannot be split further, you cannot create ‘totals’ for everyone by region or gender. For example, you cannot see results for all ages by region, or all brain tumours by gender. If these totals were calculated and released, it might be possible to identify patients, which is why Public Health England cannot release this data.

Statistical reasons and data availability

If you can select a patient group from the chart menus, but the chart does not display, the data is unavailable for one of several reasons:

Data is not yet available for the selected year from Public Health England.
Data is not available because the data quality is too poor to release this statistic.
Data is not available as the statistic is not appropriate for this group.
Data is not available because the standard error of the estimate was greater than 20% and so the estimate has been supressed.

Incidence

The number or rate (per head of population) of new cases of a disease diagnosed in a given population during a specified time period (usually a calendar year). The crude rate is the total number of cases divided by the mid-year population, usually expressed per 100,000 population.

Malignant

Malignant tumours which grow by invasion into surrounding tissues and have the ability to metastasise to distant sites

Mortality

The number or rate (per head of population) of deaths in a given population during a specified time period (usually a calendar year). The crude rate is the total number of deaths divided by the mid-year population, usually expressed per 100,000 population.

Non-malignant

Not cancerous. Non-malignant tumours may grow larger but do not spread to other parts of the body.

Survival

The length of time from the date of diagnosis for a disease, such as cancer, that patients diagnosed with the disease are still alive. In a clinical trial, measuring the survival is one way to see how well a new treatment works. Also called ‘overall survival’ or ‘OS’.

Routes to Diagnosis

Under the ‘Routes to Diagnosis’ tab in the Brain Tumour Data Dashboard, you can explore the ways patients have been diagnosed with brain tumours. There are many ways, or routes, for cancers to be diagnosed in the NHS. A ‘route to diagnosis’ is the series of events between a patient and the healthcare system that leads to a diagnosis of cancer. The routes include:

Two Week Wait

Patients are urgently referred by their GP for suspected cancer via the Two Week Wait system and are seen by a specialist within 2 weeks where they are diagnosed.

GP referral

Diagnosis via a GP referral includes routine and urgent referrals where the patient was not referred under the Two Week Wait system.

Emergency Presentation

Cancers can be diagnosed via emergency situations such as via A&E, emergency GP referral, emergency transfer or emergency admission.

Outpatient

Outpatient cancer diagnoses include diagnoses via an elective route which started with an outpatient appointment that is either a self-referral or consultant to consultant referral. (It does not include those under the Two Week Wait referral system).

Inpatient elective

Diagnosis via an inpatient elective route is where diagnosis occurs after the patient has been admitted into secondary care from a waiting list, or where the admission is booked or planned.

Death Certificate Only

Diagnoses made by Death Certificate Only are made where there is no more information about the cancer diagnosis other than the cancer related death notifications. The date of diagnosis is the same as that of the date of death.

Unknown

For some patients with a cancer diagnosis, there is no relevant data available to understand the route to diagnosis.

More information

If any of the statistical terms in this section of the brainstrust website are hard to understand, we recommend looking them up here:

Cancer Research UK’s Cancer Statistics Explained

http://www.cancerresearchuk.org/health-professional/cancer-statistics/cancer-stats-explained/statistics-terminology-explained#heading-Seven

If you are looking for help understanding terms relating specifically to brain tumours, and treatment, then the brainstrust glossary is available here:

https://www.brainstrust.org.uk/advice-glossary.php

Up to date brain tumour data

Brain tumour data may influence the decisions you make about your care. Data also helps you understand the bigger picture, or landscape, in which you find yourself.