Brain health – time matters 2024 Report
Foreign language translations of Brain health – time matters 2024 Report
Independent translations
French
We are grateful to MS Canada for leading the translation of the report into French.
We are grateful to MS Canada for leading the translation of the report into French.
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Executive summary:
The Brain Health Center of the Rockies is a non-profit 501(c)(3) organization funded in 2019. Our main goal is to provide personalized education on Brain Health to individuals with neurological disorders. My role as co-founder and president of this nonprofit organization focuses on the detail of knowledge growth and dissemination. Our flagship program is a multiple sclerosis Brain Health Program. The overarching goal for this program is to offer personalized multidisciplinary care strategies aiming to maximize brain health in MS patients. I have taken particular attention to ensure the success of this program, while working closely with our instructors to bring much needed information to patients so they feel empowered. MS patients and their caregivers have access to a menu of both pre-recorded on-line classes as well as live virtual sessions to answer questions and debrief on main topics with specialists in the field.
Executive summary:
Following the outset of the ongoing revolution in medicine, healthcare systems needed to shift from a disease-centered to a patient-centered paradigm based on prediction, prevention and personalized interventions, which warrant better clinical management and outcomes. In the context of multiple sclerosis (MS), the Italian Multiple Sclerosis Foundation (FISM) developed a research programme focused on the application of innovative computational tools to big-databases of patients-centered measurements in order to support decisions on rehabilitative therapies towards more personalized treatments. We conducted our programme through a multidisciplinary team composed by physiatrists, psychologists, physiotherapists, bioengineers and biologists. National and international collaborations allowed the inclusion of specific skills into the main research and treatment fields. Moreover, the MULTI-ACT1 model encompassing new criteria for mission-driven governance, innovative guidelines for effective patient engagement, and multi-dimensional assessments has been adopted to ensure the effective cooperation of all relevant stakeholders in responsible research and care.
1. Zaratin P, Bertorello D and Guglielmino R, et al. Health Res Policy Syst. 2022;20:22.
Executive summary:
There is a huge need for more personalized medicine in Multiple Sclerosis (MS). Despite the availability of treatment options, 1 in 4 people can start on the wrong treatment for as long as 3 years1,2.
icobrain was developed to quantify brain MRI scans, is fully automated, cleared as a medical device, seamlessly integrated in hospital systems, and validated in over 30 peer-reviewed publications. Thanks to icobrain, the time to detect disease activity in MS can be reduced by 2-3 years, with an increased sensitivity of 250% 4. Health outcomes can be improved by 68% compared to the introduction of disease-modifying treatments (DMTs)3. As clinical decision making goes beyond MRI reading, the medical device app icompanion was developed together with people with MS (PwMS).
Together, icobrain and icompanion provide relevant clinical decision-making information for MS, such as assessments of new lesions and brain atrophy, patient-reported EDSS and relapses.
1. Sá MJ, de Sá J, Sousa L. Neurology and Therapy. 2014;3:89–99.
2. Daugherty KK, Butler JS and Mattingly M et al. Journal of the American Pharmacists Association. 2005;45:371–5.
3. Sima DM, Esposito G and Van Hecke W et al. Brain Sciences. 2021;11:1570.
4. Van Hecke W, Costers L and Descamps A et al. Brain Sciences. 2021;11:1171.
Executive summary:
The Norwegian Multiple Sclerosis (MS) Registry discovered in 2016 that there were large national discrepancies in time from patient referral to diagnosis and to start of treatment. We used the recommendations from the Brain Health Initiative and had the following goal: That at least 75% of the patients referred for diagnosis of MS should have received treatment within 49 days after the referral was received, independent of where in Norway they were living. The project was implemented locally at our hospital in 2018 and then exported to seven Norwegian hospitals. We reached the projects main goal two years after project start. The project led to a dramatic decrease in time from referral to treatment and from referral to diagnosis. This demonstrates that simple logistic changes can lead to substantial better quality in follow-up of patients.
Executive summary:
A courageous journey from West London to the wilds of the Scottish Western Isles lies at the heart of ‘Our Big MS Adventure’, as wheelchair bound Al Fraser fulfils a final dream. His story is interwoven with the frank, often funny and ultimately heart-warming stories of three women also diagnosed with MS. Through them, breakthroughs in medical science are revealed which bring hope to millions world-wide.
Directed by BAFTA award winner Tony Dow, best known for ‘Only Fools and Horses, there are great dollops of humour where you least expect it….
MS:OK.UK is a website work in progress set up as a platform for the film and to host a wealth of information from MS experts, including brain health specialists, that could not be included in the final edit. It will also host a podcast by Maria, Sophie and Elizabeth who feature in the film, discussing life with MS ongoing…
Executive summary:
Dr. Marrie is known internationally for her innovative work regarding the frequency and impact of comorbidity on outcomes in people with multiple sclerosis. She has used multiple methods to show that comorbidity adversely affects relapse rates, treatment, mortality, and quality of life in people with MS. These findings have influenced research, clinical care and treatment guidelines. They also provide a foundation for future work aimed at determining whether improving the management of comorbidity improves brain health and outcomes in MS.
Executive summary:
I belong to a developing country grappling with multitude of diseases. Unfortunately, MS doesn’t feature in the priority of policy makers with access to rehabilitation difficult and economically draining. The unforeseen COVID pandemic has exacerbated the situation, negatively impacting mental and social well-being. Being a qualified physiotherapist with specialization in Physiotherapy in Neurology & Psychosomatic disorders, it was high time we did something “out of the box” harnessing the reach of internet. With the help of local MS society, we reached out to patients pan India and devised programmes which were easily accessible and free of cost. This was the first time Indian MS patients were assessed using standard Motor and Cognitive screening scales and made aware about importance of early diagnosis and frequent physiotherapy in improving their QOL. Our first programme (2021) focused on physical functions and motor imagery (MI), and second programme (2022) focuses on motor imagery training.
Executive summary:
Through an innovative approach to disease education, we harnessed the power of technology, social media, and Multiple Sclerosis (MS) influencers to raise awareness of the vital recommendation of the “Brain Health: Time Matters in MS’ report and educate the MS community about the importance of taking prompt action to address symptoms of MS and minimise delays in both diagnosis and treatment initiation.
Eight influential individuals living with MS across Australia were brought together – each chosen because of their significant social influence in advocating for MS. Guided by MS expert and report author Prof. Gavin Giovannoni, alongside local neurologist Dr. Chris Dwyer, an expert team was assembled to take part in virtual roundtables to translate the confronting realities of this latest scientific research into ready-to-share social resources for the MS community, particularly those in their twenties and thirties, to motivate them to act quickly to protect their brain health.
Executive summary:
The Brain Health Center of the Rockies is a non-profit (501-c3) organization funded in 2019. Our main goal is to provide personalized education on Brain Health to individuals with neurological disorders. This organization was funded to fill a current gap in patient care. As health care providers, we recognize the importance of developing systems that respect and follow the core values of patient-centered care. Among those, we believe that patients should be empowered to participate in the decision-making process through personalized education, where values, cultural traditions, and socioeconomic conditions are considered.
In order to achieve our goals and vision, we believe is imperative to start by providing a space where patients can access educational resources in ways that anyone can understand. For that reason, our educational activities follow well-established techniques used in Medical Education.
Executive summary:
In line with MS Brain Health recommendations (mainly n.2 and n.3), the Italian MS Society, as boundary organization between science and society, has developed the MULTI-ACT model1 allowing for the effective participation of all relevant stakeholders in responsible research and care.
The MULTI-ACT model, made available to the Health community through a free and user-friendly digital toolbox, has received attention from the scientific community and is being used by several institutions.
The model has been adopted by the Italian MS Society, in particular in the rehabilitation research area, allowing for a holistic approach towards therapeutic (biological) and personalized rehabilitation.
1. Zaratin P, Bertorello D and Guglielmino R, et al. Health Res Policy Syst. 2022;20:22.
Entries for this category can include any patient group or organization that has actively encouraged the adoption of methods to maximize the lifelong brain health of people with MS. This should include one or more of the MS Brain Health recommendations on either a local, national or global scale since the recommendations report launch in 2015. Entries will be judged on the need for improvement, the strategy and tactics implemented, and the impact and outcomes achieved. Please also highlight any progression of the project that may occur in the future.
All entries must be submitted as a written document and short video in the English language. Please see the entry specifications below. All entries will be anonymized for judging.
Written document
Entry title
Please give a simple title for your entry of no more than 15 words.
Executive summary – 150 words maximum
This section is a summary of your entry and will be used if the entry is selected as a finalist. It does not need to be anonymized.
Situation analysis and needs assessment – 150 words maximum
Strategy – 200 words maximum
Creativity and execution – 250 words maximum
Effectiveness: outcomes vs objectives – 250 words maximum
Written documents can include figures, images and diagrams (but this should be limited to three) and should only be used if copyright permissions have been granted. Any patient cases included must be anonymized.
Video entry
Videos should be no more than 3 minutes in length and should be provided as a MP4 file or as a PowerPoint (PPT) file with audio.
Videos should include:
If your entry is selected as a finalist, your video will be shared on the MS Brain Health website and social media channels, so please ensure you gain written permission for the video to be shared from everyone who is included in your film. Please avoid including any personal contact details in the video.
By submitting an entry, you agree you have read and understood the terms of our privacy policy.
Entries for this category can be from individuals (healthcare professionals, pharmaceutical industry representatives or patient advocates), teams, clinics or organizations. Each entry should highlight how one or more of the MS Brain Health recommendations has been implemented to improve outcomes of people with MS through an innovation, which could include a change in clinical practice, process or system, or use of a digital technology. Entries should demonstrate the unmet needs, strategy and outcomes, as well as include links to any digital technologies or websites.
All entries must be submitted as a written document and short video in the English language. Please see the entry specifications below. All entries will be anonymized for judging.
Written document
Entry title
Please give a simple title for your entry of no more than 15 words.
Executive summary – 150 words maximum
This section is a summary of your entry and will be used if the entry is selected as a finalist. It does not need to be anonymized.
Situation analysis and needs assessment – 150 words maximum
Strategy – 200 words maximum
Creativity and execution – 250 words maximum
Effectiveness: outcomes vs objectives – 250 words maximum
Written documents can include figures, images and diagrams (but this should be limited to three) and should only be used if copyright permissions have been granted. Any patient cases included must be anonymized.
Video entry
Videos should be no more than 3 minutes in length and should be provided as a MP4 file or as a PowerPoint (PPT) file with audio.
Videos should include:
If your entry is selected as a finalist, your video will be shared on the MS Brain Health website and social media channels, so please ensure you gain written permission for the video to be shared from everyone who is included in your film. Please avoid including any personal contact details in the video.
By submitting an entry, you agree you have read and understood the terms of our privacy policy.
Entries for this category can be from individual healthcare professionals (neurologists, nurses, allied healthcare professionals) or be nominations by other individuals on behalf of an individual healthcare professional.
Each entry should highlight how the healthcare professional has actively fostered one or more of the MS Brain Health recommendations and applied this to their clinic or practice to improve patient outcomes. Entries should demonstrate the unmet needs, strategy and outcomes, as well as include anonymized patient case studies.
Nominators (those nominating someone else) should submit a 200-word summary outlining the reason for nomination. We will then contact the nominees and ask them to submit further information.
Please submit a 200-word summary outlining the reason for nomination and highlighting how the healthcare professional has actively fostered one or more of the MS Brain Health recommendations and applied them to their clinic to improve patient outcomes.
By submitting a nomination, you agree you have read and understood the terms of our privacy policy.
All entries must be submitted as a written document and short video in the English language. Please see the entry specifications below. All entries will be anonymized for judging.
Written document
Entry title
Please give a simple title for your entry of no more than 15 words.
Executive summary – 150 words maximum
This section is a summary of your entry and will be used if the entry is selected as a finalist. It does not need to be anonymized.
Situation analysis and needs assessment – 150 words maximum
Strategy – 200 words maximum
Creativity and execution – 250 words maximum
Effectiveness: outcomes vs objectives – 250 words maximum
Written documents can include figures, images and diagrams (but this should be limited to three) and should only be used if copyright permissions have been granted. Any patient cases included must be anonymized.
Video entry
Videos should be no more than 3 minutes in length and should be provided as a MP4 file or as a PowerPoint (PPT) file with audio.
Videos should include:
If your entry is selected as a finalist, your video will be shared on the MS Brain Health website and social media channels, so please ensure you gain written permission for the video to be shared from everyone who is included in your film. Please avoid including any personal contact details in the video.
By submitting an entry, you agree you have read and understood the terms of our privacy policy.
Entries for this category can include any MS clinic or healthcare team that has actively encouraged the adoption of methods to maximize the lifelong brain health of people with MS. This should include one or more of the MS Brain Health recommendations or the use of the MS Brain Health quality improvement tool at a local or national level since the recommendations report launch in 2015. Entries will be judged on the need for improvement, the strategy and tactics implemented, and the impact and outcomes of the project. Please also highlight any progression of the project that may occur in the future.
All entries must be submitted as a written document and short video in the English language. Please see the entry specifications below. All entries will be anonymised for judging.
Written document
Entry title
Please give a simple title for your entry of no more than 15 words.
Executive summary – 150 words maximum
This section is a summary of your entry and will be used if the entry is selected as a finalist. It does not need to be anonymized.
Situation analysis and needs assessment – 150 words maximum
Objective and Strategy – 250 words maximum
Creativity and execution – 250 words maximum
Effectiveness: outcomes vs objectives – 250 words maximum
Written documents can include figures, images and diagrams (but this should be limited to three) and should only be used if copyright permissions have been granted. Any patient cases included must be anonymised.
Video entry
Videos should be no more than 3 minutes in length and should be provided as a MP4 file or as a PowerPoint (PPT) file with audio.
Videos should include:
If your entry is selected as a finalist, your video will be shared on the MS Brain Health website and social media channels, so please ensure you gain written permission for the video to be shared from everyone who is included in your film. Please avoid including any personal contact details in the video.
By submitting an entry, you agree you have read and understood the terms of our privacy policy.
Entries for this category can be from individual patient advocates (or person with MS) or be nominations by other individuals on behalf of an individual patient advocate (or person with MS).
Each entry should highlight how the patient advocate has actively fostered one or more of the MS Brain Health recommendations and shared this with other members of their community via podcasts, blogs, social media, support groups or patient meetings (on a local, national or global level). Entries should demonstrate the unmet needs, awareness raising and outcomes, as well as include testimonials.
Nominators (those nominating someone else) should submit a 200-word summary outlining the reason for nomination. We will then contact the nominees and ask them to submit further information.
Please submit a 200-word summary outlining the reason for nomination and highlighting how the healthcare professional has actively fostered one or more of the MS Brain Health recommendations and applied them to their clinic to improve patient outcomes.
By submitting a nomination, you agree you have read and understood the terms of our privacy policy.
All entries must be submitted as a written document and short video in the English language. Please see the entry specifications below. All entries will be anonymized for judging.
Written document
Entry title
Please give a simple title for your entry of no more than 15 words.
Executive summary – 150 words maximum
This section is a summary of your entry and will be used if the entry is selected as a finalist. It does not need to be anonymized.
Situation analysis and needs assessment – 150 words maximum
Strategy – 200 words maximum
Creativity and execution – 250 words maximum
Effectiveness: outcomes vs objectives – 250 words maximum
Written documents can include figures, images and diagrams (but this should be limited to three) and should only be used if copyright permissions have been granted. Any patient cases included must be anonymized.
Video entry
Videos should be no more than 3 minutes in length and should be provided as a MP4 file or as a PowerPoint (PPT) file with audio.
Videos should include:
If your entry is selected as a finalist, your video will be shared on the MS Brain Health website and social media channels, so please ensure you gain written permission for the video to be shared from everyone who is included in your film. Please avoid including any personal contact details in the video.
By submitting an entry, you agree you have read and understood the terms of our privacy policy.
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If you believe in creating a better future for people with multiple sclerosis, please support the MS Brain Health campaign.
The MS Brain Health campaign is a call to action based on recommendations from the international consensus report Brain health: time matters in multiple sclerosis.
Our vision is to create a better future for people with multiple sclerosis and their families. Your voice will help to effect this change.