In Brain News, Charity News, Press Releases, Research News

myTomorrows and brainstrust are working to support the brain tumour community in accessing clinical trials.

There are over 80,000 people living with a brain tumour in the UK, with a patient receiving a diagnosis every two hours. Brain tumours kill more children and adults under the age of 40 than any other cancer, and incidences and deaths from brain tumours are on the rise.  

With only 12% of brain tumour patients surviving beyond five years of their diagnosis, it is crucial for these people to be as robustly and accurately informed as possible in their search for treatment options – especially when it comes to clinical trials, as it is often difficult to find and understand relevant information about them. 

Yet despite these difficult statistics there has also never been a more active novel trials and treatments landscape for people with a brain tumour. Whilst this is hopeful, it also brings an added layer of complexity for people to navigate after diagnosis. Trials are run at different hospitals, with different inclusion criteria, and for different brain tumour diagnoses. It is patently clear in working with the brain tumour community that researching this landscape in itself is an exhausting commitment, that takes up precious time.

In the face of increasing opportunity and growing patient interest in novel trials and treatments, it is important that brainstrust can now provide its sizeable patient community with timely, up to date and useful information about credible and accessible clinical trials, with expert support from myTomorrows. myTomorrows’ trained patient navigators will act as a single point of contact to guide patients with a brain tumour, their loved ones, and healthcare professionals through the vast landscape of medical care and help them make the best possible decision during their treatment journey.  

“This is a very helpful and meaningful collaboration for the brain tumour community,” said Helen Bulbeck, Director of Policy and Services, brainstrust. “This partnership means that people can build on the confidence and focus they have gained through their coaching with brainstrust and apply it to securing access to tangible options with the support of myTomorrows. People can be assured that they have turned every stone on their brain tumour journey and that they are working towards their best possible outcome.” 

“We are very excited to be partnering with brainstrust, which boasts years of experience supporting and educating patients with brain cancer about many different aspects of their disease. Our collaboration aims to empower these patients to navigate their treatment journeys with more confidence and options,” said Michel van Harten, CEO of myTomorrows. “Collaborating with leading patient advocacy organisations like brainstrust allows myTomorrows to extend our reach to patients affected by numerous conditions. This partnership forms part of our overall mission to raise patients’ and physicians’ awareness of different treatment options while enabling pharmaceutical companies to expand access throughout the drug development cycle.” 

myTomorrows is a digital platform that helps patients and their doctors discover and access treatments. The myTomorrows platform conducts a comprehensive search of databases worldwide to provide patients and physicians with possible pre-approval treatment options. myTomorrows also offers biopharmaceutical companies services such as clinical trial recruitment support, international expanded access programs management and real-world data collection and utilization. Headquartered in Amsterdam with an office in New York City, myTomorrows has helped more than 5,000 patients and 500 physicians in over 80 countries to date.

To find out more about brain tumour clinical trials, how they work, things to consider when looking to take part in a trial, and to find out more about this collaboration between brainstrust and myTomorrows, click here. 

 

You can visit myTomorrows website by clicking here

 

To access support navigating brain tumour trials with brainstrust and myTomorrows, click here.

meningioma
Meningioma Matters – Thurs April 25th 13.00Past Events, Patient & Carer Events
Golden Generosity: A Fundraiser Celebrating 50 Years of LoveDo your own thing, Fundraising News

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

  1. Select the year of diagnosis using the drop down menu.
  2. 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
  3. 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:

  1. 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.

  1. 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:

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

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.

Brain tumour data and statistics influence the focus, and work of organisations like brainstrust. The information helps us to understand the scale and impact of the problems we are setting out to solve.

This tool helps you understand the landscape in which you find yourself having been diagnosed with a brain tumour. This landscape can be particularly tricky to navigate as there are many different types of brain tumour, all of which have a different impact.

The information you see represents the most up-to-date, official, population level brain tumour data available for England. Over time we will be adding to the brain tumour data available and publishing reports, with recommendations, as a result of what we learn from this data.

The data behind this content has come from Public Health England’s National Cancer Registration and Analysis Service (NCRAS) and is a direct result of the ‘Get Data Out’ project.

This project provides anonymised population level brain tumour data for public use in the form of standard output tables, accessible here: http://cancerdata.nhs.uk/standardoutput

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:

  1. 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.

  1. GP referral

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

  1. Emergency Presentation

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

  1. 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).

  1. 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.

  1. 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.

  1. 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