Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership.

BACKGROUND: Typically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP). The primary objective of this partnership is to identify priorities for research and patient advocacy topics. METHODS: In the first phase of this PSP, including 264 sarcoma patients and carers from all over the world, 23 research topics regarding sarcomas and 15 patient advocacy topics were identified using an online survey. In the second phase, participants were asked to fill in a top five and a top three of research and patient advocacy topics, respectively. Additionally, sociodemographic characteristics and sarcoma characteristics were collected. Social media channels, local national patient advocacy groups and the SPAGN website were used to distribute the survey. RESULTS: In total, 671 patients (75%) and carers (25%) participated in this survey. The five highest ranked research topics were related to causes of sarcoma (43%), prognosis and risk of recurrence (40%), specific subtypes of sarcoma (33%), the role of immunotherapy, targeted therapy and combined therapy (30%), and hereditary aspects (30%). The three highest ranked patient advocacy topics were improving the diagnostic process of sarcoma (39%), access to tumor DNA analysis (37%) and establishing an international sarcoma registry (37%). CONCLUSIONS: This sarcoma PSP has identified priorities for research and patient advocacy, offering guidance for researchers, assisting funding agencies with assessing project relevance and empowering patient advocates to represent the needs of patients and carers.

The importance of patient-specific resources for families dealing with prenatal rare diseases.

Rare diseases (RDs) are defined as diseases that affect a low number of the population. Prenatal diagnoses of RDs can add a lot of unique stress for parents. For example, parents who have prenatal diagnoses experience not only grief of expectation, but are forced to become patient advocates with incomplete information as their child is not yet born, and in many cases parents experience a lot of uncertainty. This typically involves seeking support groups and finding pre- and postnatal specialists all which come with mental and financial cost. Here we discuss the importance of targeted patient resources for parents to help alleviate some of their stress. Patient advocacy organizations can be incredibly useful for parents to navigate the complex healthcare system and help mitigate feelings of isolation, especially when parents can talk to others in a similar situation. We collaborated with a patient organization to create a prenatal parent support guide to address how parental needs such as mental well-being and practicing self-care can be met. We hope that resources such as these can help empower those with a pregnancy affected with a RD diagnosis.

The female self-advocacy in Cancer Survivorship scale is a psychometrically sound measure of self-advocacy in male cancer survivors.

OBJECTIVE: To develop and psychometrically evaluate an adapted version of the Female Self-Advocacy in Cancer Survivorship (FSACS) Scale in men with a history of cancer. METHODS: This psychometric instrument development and validation study used a two-phase approach to first adapt the FSACS Scale items to reflect the experience of men with a history of cancer and then evaluate the psychometric properties of the adapted scale compared to the original FSACS Scale. The study was conducted from December 2018 through April 2022 through cancer clinics, patient registries, and national advocacy organizations. We evaluated scale reliability and validity using reliability coefficients, exploratory and confirmatory factor analyses, and item analyses to determine a final set of scale items. RESULTS: Item responses from N = 171 men with a history of cancer were evaluated to determine scale validity. After removing poor-performing items based on item-level analyses, factor analyses confirmed that a 3-factor structure of both the adapted and original FSACS Scale best fit the scale. The 10 new items did not outperform the original 20-item scale and were therefore excluded from the final scale. The final 20-item scale explained 87.94% of item variance and subscale's Cronbach α varied from 0.65 to 0.86. CONCLUSION: The SACS Scale can be used in research and clinical contexts to assess the propensity of men and women to get their needs, values, and priorities met in the face of a challenge.

Two decades of patient advocacy.

The European Federation of Neurological Associations (EFNA) brings together European umbrella organizations of pan-European neurological patient advocacy groups (www.efna.net) and strives to improve the quality of life of people living with neurological conditions and to work towards relieving the immense social and economic burden on patients, carers and society in general. This article provides an overview of EFNA's activities and achievements over the past two decades, the evolution of patient advocacy during those years, and the increased role and impact of the European patient voice in the neurological arena.

Identifying and addressing the needs of caregivers of patients with cancer: evidence on interventions and the role of patient advocacy groups.

As the number of people with cancer increases, so does the number of informal caregivers. These caregivers frequently have multiple unmet needs and experience numerous burdens. Here we explore the crucial roles of these caregivers and categorize their unmet needs into four areas: information, relationship and communication, emotional support, and practical or financial needs. We provide evidence on emerging interventions aimed at supporting caregivers, including patient/caregiver assessments, education, collaborative care, financial assistance, wellness, informational programs, and an integrated caregiver clinic. Finally, we delve into the vital role that patient advocacy groups play in addressing the unmet needs of cancer patients and their caregivers by providing comprehensive support, including education, resources, counseling, guidance, and financial aid.

As the number of people living with cancer increases, the number of informal caregivers is also increasing. Most often, these caregivers are family members, friends, or spouses of the person with cancer. Caregivers of patients with cancer help with medical tasks and routine chores, like driving, and even personal care, such as bathing. Caregiving can be challenging, emotionally taxing, and time-consuming, all while being unpaid. In this review, we identify four unmet needs of caregivers of patients with cancer and examine how they are being addressed. First, caregivers need cancer care information that is presented in an understandable way. This will help the caregiver and the patient make better decisions about cancer care and treatment. Second, caregivers need better relationships and communication with the patient's clinicians. In addition, caregivers must also navigate, and sometimes mend, challenging relationships with the patients that they care for. Third, caregivers need more emotional support, including the option for counseling and therapy. Fourth, caregivers may need practical and financial support, particularly since the time demands and stress of caregiving can disrupt their ability to earn a living. Although many attempts have been made to address these caregiver needs, gaps still remain. Increasing awareness of information targeting caregivers and patients could reduce their uncertainty and help with decision-making. Even when resources are available, caregivers may not always be aware of or linked to them. Patient advocacy groups play a critical role in connecting caregivers with available resources. They also provide a variety of support services, including education, navigation, and financial assistance.

'High hopes for treatment': Australian stakeholder perspectives of the clinical translation of advanced neurotherapeutics for rare neurological diseases.

INTRODUCTION: Advanced therapies offer unprecedented opportunities for treating rare neurological disorders (RNDs) in children. However, health literacy, perceptions and understanding of novel therapies need elucidation across the RND community. This study explored healthcare professionals' and carers' perspectives of advanced therapies in childhood-onset RNDs. METHODS: In this mixed-methodology cross-sectional study, 20 healthcare professionals (clinicians, genetic counsellors and scientists) and 20 carers completed qualitative semistructured interviews and custom-designed surveys. Carers undertook validated psychosocial questionnaires. Thematic and quantitative data analysis followed. RESULTS: Participants described high positive interest in advanced therapies, but low knowledge of, and access to, reliable information. The substantial 'therapeutic gap' and 'therapeutic odyssey' common to RNDs were recognised in five key themes: (i) unmet need and urgency for access; (ii) seeking information; (iii) access, equity and sustainability; (iv) a multidisciplinary and integrated approach to care and support and (v) difficult decision-making. Participants were motivated to intensify RND clinical trial activity and access to advanced therapies; however, concerns around informed consent, first-in-human trials and clinical trial procedures were evident. There was high-risk tolerance despite substantial uncertainties and knowledge gaps. RNDs with high mortality, increased functional burdens and no alternative therapies were consistently prioritised for the development of advanced therapies. However, little consensus existed on prioritisation to treatment access. CONCLUSIONS: This study highlights the need to increase clinician and health system readiness for the clinical translation of advanced therapeutics for RNDs. Co-development and use of educational and psychosocial resources to support clinical decision-making, set therapeutic expectations and promotion of equitable, effective and safe delivery of advanced therapies are essential. PATIENT OR PUBLIC CONTRIBUTION: Participant insights into the psychosocial burden and information need to enhance the delivery of care in this formative study are informing ongoing partnerships with families, including co-production and dissemination of psychoeducational resources featuring their voices hosted on the Sydney Children's Hospitals Network website SCHN Brain-Aid Resources.

The impact of visiting restrictions in intensive care units for families during the COVID-19 pandemic: An integrative review.

AIM: To synthesize current evidence about the impact visiting restrictions in adult intensive care units have on family members during the COVID-19 pandemic. DESIGN: Integrative literature review. METHODS: A total of 104 articles were retrieved. Screening yielded a total of 23 articles which were appraised for quality. Reflexive thematic analysis was applied to synthesize findings and extract themes. DATA SOURCES: CINAHL Plus, Ovid MEDLINE, PubMed and ProQuest databases were searched for articles between January 2020 and November 2022. RESULTS: The findings were grouped into two main themes with six subthemes. Theme 1: not being present at the bedside, and Theme 2: altered communication added to family members' distress. Findings indicate that visiting restrictions imposed during the COVID-19 pandemic had negative consequences for family members. CONCLUSION: The patient and their family are inherently connected, prioritizing family presence with the return of flexible, open visitation policies in ICU must be a priority to mitigate further harm and adverse outcomes for all. REPORTING METHOD: The review complies with the PRISMA guidelines for reporting systematic reviews. IMPLICATIONS FOR PROFESSION: Nursing leaders must be included in the development of future pandemic policies that advocate family-centred care. NO PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was included in this review.

Patient's best interest as viewed by nursing students.

BACKGROUND: In recent years, patient advocacy has emerged as a prominent concept within healthcare. How nursing students decide what is best for their patients is not well understood. OBJECTIVE: The objective is to examine nursing students' views on doing what is best for patients during their clinical experiences and how they seek to establish patient interests when providing care. Research questions guiding the interview were as follows: (1) What are nursing students' perceptions of patient interests? (2) What factors influence nursing students' perceptions of advocating for patient's interests? RESEARCH DESIGN: Qualitative descriptive research using thematic analysis. PARTICIPANTS AND RESEARCH CONTEXT: Data was collected through individual online interviews with nine nursing students with clinical experience. ETHICAL CONSIDERATIONS: The study was approved by the University Research Ethics Committee. Participants provided digital informed consent. RESULTS: The students asserted that they are able to understand the patients' interests by placing emphasis on the patients' needs. They believe that it is crucial to adopt a collaborative strategy for the provision of care to meet these requirements. In addition, some of them expressed concern over the most effective methods of advocating for the interests of patients. Three themes were identified. (1) Focussing on patient needs first, (2) taking a collective approach, and (3) learning how to advocate. CONCLUSIONS: Students understand and value the ethical commitments associated with advocating for the patient's best interest by considering factors such as prioritising the patient's needs, adopting a strategy that involves everyone, and acquiring the ability to undertake the advocacy role. Additionally, nursing education strategies in clinical contexts require additional study to inspire students to do what is in their patient's best interests.

What is loneliness? A reflection on my Imperial College London Patient Project.

Loneliness has emerged as a significant public health concern, with profound implications for health outcomes, which can manifest in physical, psychological, and social affliction. Working alongside Fulham Medical Centre, I sought out to create a range of both offline and online resources (YouTube video, ten-episode Spotify podcast, online website, GP practice brochure and poster) designed to provide base learning, practical strategies, community connections and a sense of support to those grappling with loneliness. These resources were well-received by the practice and were implemented on a practice basis, to provide support to the local community. Reflection on this project, highlights the need for student projects, and emphasises the tangible impact that we can have on community support and care for individuals tackling feelings of loneliness.

Implementation of precision medicine in healthcare-A European perspective.

The technical development of high-throughput sequencing technologies and the parallel development of targeted therapies in the last decade have enabled a transition from traditional medicine to personalized treatment and care. In this way, by using comprehensive genomic testing, more effective treatments with fewer side effects are provided to each patient-that is, precision or personalized medicine (PM). In several European countries-such as in England, France, Denmark, and Spain-the governments have adopted national strategies and taken "top-down" decisions to invest in national infrastructure for PM. In other countries-such as Sweden, Germany, and Italy with regionally organized healthcare systems-the profession has instead taken "bottom-up" initiatives to build competence networks and infrastructure to enable equal access to PM. In this review, we summarize key learnings at the European level on the implementation process to establish sustainable governance and organization for PM at the regional, national, and EU/international levels. We also discuss critical ethical and legal aspects of implementing PM, and the importance of access to real-world data and performing clinical trials for evidence generation, as well as the need for improved reimbursement models, increased cross-disciplinary education and patient involvement. In summary, PM represents a paradigm shift, and modernization of healthcare and all relevant stakeholders-that is, healthcare, academia, policymakers, industry, and patients-must be involved in this system transformation to create a sustainable, non-siloed ecosystem for precision healthcare that benefits our patients and society at large.

A tripartite approach toward ending cancer as we know it, for everyone: An American Cancer Society perspective.

Gaps in the cancer care continuum are vast, both in the United States and globally. The American Cancer Society orchestrates an integrated, tripartite approach toward improving the lives of cancer patients and their families through research, advocacy, and patient support. With a focus on eradicating cancer disparities, the American Cancer Society aims to scale and deploy best practices worldwide through partnerships, to ensure everyone has an opportunity to prevent, detect, treat, and survive cancer.

Down but not defeated: Clinicians can harness the power of policy for LGBTQ+ rights.

The legal and medical rights of lesbian, gay, bisexual, transgender, queer (LGBTQ+) and other gender and sexual minority (GSM) youth are under attack in the United States. Approximately 160 anti-LGBTQ+ bills were proposed across the United States during the 2021 legislative session, with 70% of states considering at least one anti-LGBTQ+ bill. Over one hundred of the proposed bills specifically target transgender youth and have already resulted in the prohibition of nearly 85,000 13-17-year-old trans youth from participating in sports as their affirmed gender. Such legislation directly impacts the health of youth including in Arkansas and Tennessee which passed bills that limit youth access to evidenced-based, gender-affirming care; in February 2022, the governor of Texas directed state agencies to investigate gender-affirming care for trans youths as 'child abuse'. Despite these anti-LGBTQ+ proposed and passed laws, 22 states have full non-discrimination protections for LQBTQ+ individuals, and 24 states have laws that protect LGBTQ+ students from bullying on the basis of their sexual orientation and/or gender identity. Civil rights policies have the power to grant protections to LGBTQ+ youth under the law. Conversely, the rollback of those liberties may lead to irreparable harm and preventable deaths. The consequences of anti-LGBTQ+ legislation can additionally deleteriously affect local and state economies as companies and organizations move to supportive communities. Clinicians can, and should, play an important role to engage stakeholders and advocate for LGBTQ+ inclusive policies at the institutional, local, state, and national policy level.

Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.

Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges.

Prenatal genetic counseling in states hostile to abortion in the final days of Roe v. Wade: A qualitative study.

Genetic counselors (GCs) play an important role in providing and coordinating care for patients considering abortion care secondary to fetal anomaly and/or genetic diagnosis. In the United States, restrictive legislation reducing access to abortion has increased dramatically in recent years. In Texas, an unusual vigilante-style law went into effect in September 2021, effectively banning all abortion after 6-week gestation; this more restrictive legislation was widely seen as a harbinger of things to come. To assess the impact of evolving abortion restrictions on genetic counseling practice and patient care, we conducted semistructured interviews with 34 GCs practicing in states characterized as hostile to abortion using standards developed by the Guttmacher Institute and analyzed using Dedoose software. All interviews took place prior to the June 2022 Supreme Court decision overturning Roe v. Wade. Our qualitative study offered some support for earlier work, suggesting that time pressure created by gestational age limits and the potential need for patients to travel out of state for abortion care was the most significant impact on GC practice. However, GCs practicing in Texas and other highly restrictive states were more likely to report that legal uncertainty had a greater impact, often affecting their ability to counsel patients. GCs in Texas also emphasized that institutional guidance was helpful and that a lack of institutional guidance hindered patient care. With the Supreme Court decision in June 2022 overturning the right to abortion established under Roe v. Wade, many more GCs are likely to practice in states where abortion is restricted or banned. Our study suggests that impediments to counseling may be underappreciated in the changing landscape of abortion law.

A coordinated health policy in response to COVID-19: A case of Botswana.

INTRODUCTION: This paper documents policy decisions and transformations in response to the COVID-19 pandemic in Botswana and utilizes the multi-sectoral approach (MSA) in providing this analysis. METHOD: A desk review of the different government gazette documents was conducted to trace health policy evolutionary developments and their impact on the general lives of the people of Botswana. FINDINGS: Revealed the actors, roles in this policy transformation and the conditions that enhanced the smooth implementation of the policies are discussed. CONCLUSION: The paper concludes by making some recommendations for the country's preparedness and anticipatory guidance for any other pandemic or disaster that may arise. CLINICAL RELEVANCE: This paper highlights the importance of the multisectoral approach in addressing crises such as pandemics. It also demonstrates the need for countries to have well-defined guidelines to allow decision making in the delivery of efficient health services to the general population during pandemics.

Building a community-academic partnership to improve screening for intimate partner violence: Integrating advocates in healthcare clinic settings.

AIMS: To develop an innovative community-academic partnership to advance, test and promote intimate partner violence screening and referral protocols by comparing the effect of integrating intimate partner violence advocates versus enhancing medical training in medical clinic settings serving women from vulnerable populations. Detecting intimate partner violence in healthcare settings allows for survivors to connect to safety and referral resources prior to violence escalating. Screening for intimate partner violence and connecting patients to referral resources requires creating a safe and trusting relationship between healthcare providers and patients. Developing screening and referral protocols responsive to survivors' needs requires involvement of clinic staff, survivors and community agencies that support survivors. DESIGN: Three phases of the project include Discovery, Implementation and Dissemination. Mixed-methodology will help in understanding current practices and effects of interventions. METHODS: Actions included in each phase: Discovery: 1) nurse-led focus groups of clinic staff, providers and survivors to understand current clinic practices; 2) retrospective chart review of the number of screens performed, positive screens detected and interventions performed. IMPLEMENTATION: 1) randomization of patients to be interviewed by a trained advocate or by healthcare provider with enhanced training; and 2) assess the number of screenings and referrals performed in each arm and 3) evaluate outcomes of intervention. Dissemination through: presentations, manuscripts and policy recommendations at the institutional and regional level. This IRB-approved proposal was funded in July 2021 by an Advancing a Healthier Wisconsin grant. DISCUSSION: The partnership has improved channels of communication and understanding between diverse clinical care providers, survivors and community agency staff as they navigate the complex challenges to the development and integration of screening and referral protocols. IMPACT: This project will provide evidence of the most effective intimate partner violence screening and referral methodology that can be utilized in a wide variety of medical settings.

Social justice attitudes of undergraduate nursing students: The impact of praxis.

BACKGROUND: Social justice is a foundational concept in nursing, yet studies on how best to impact change in nursing students' attitudes toward social justice are few. OBJECTIVES: The intent of this work was to quantify the impact on attitudes of undergraduate nursing students toward social justice, after extended interactions with adults living in poverty. METHODS: Undergraduate nursing students from three programs, university medical center, private university, and community college were given a validated survey of social justice attitudes before and after a clinical rotation with low-income adults in an inner-city neighborhood. All students did home social visits through the same social service agency. Students from the medical center were also involved with active care coordination for assigned clients. RESULTS: Each group showed significant increases in social justice attitudes following their experience. Students doing care coordination did not have significantly greater changes in overall scores but did show significant improvement in subtests others did not. CONCLUSION: Clinical opportunities placing nursing students in direct interaction with marginalized populations are recommended to increase social justice awareness.

Impact of a Co-curricular Poverty Simulation on Pharmacy Students' Socioeconomic and Patient Advocacy Attitudes and Beliefs.

Background: Pharmacists are well-positioned to assist patients facing poverty with financial and well-being resource navigation. Pharmacy educators must find avenues for students that foster awareness of applicable challenges encountered by economically disadvantaged patients. Objective: This study examines the impact of a poverty simulation on pharmacy students' socioeconomic and patient advocacy attitudes and beliefs. Methods: Third year professional pharmacy students participated in the Community Action Poverty Simulation (CAPS). Students were asked to voluntarily complete a survey prior to and following their participation. The survey was based upon a combination of 3 previously validated survey tools: Attitudes Toward Poverty (ATP) scale, Medical Student Attitudes Toward the Underserved (MSATU), and the Locus of Control Scale (LCS). Students also responded to open-ended questions postsimulation. Results: Forty of the 74 students completed both the presimulation and postsimulation surveys. Significant changes were seen in a matched sample analysis for 17 of 49 survey questions. Prominent differences (decreasing agreement) came from the statements: "An able-bodied person collecting welfare is ripping off the system" and "Welfare makes people lazy"; and increasing agreement that "I feel personally responsible for providing medical care to the needy." Open-ended survey responses reflected a greater understanding of time and effort needed to locate and navigate available resources, and challenges such as adhering to medication regimens due to inability to pay. Conclusion: A poverty simulation, such as CAPS, is an effective method to encourage pharmacy students to reflect on their future impact toward patients facing the challenges of poverty. The shift in students' attitudes and beliefs on various measures revealed that the simulation had an impact on altering perceptions for those with low socioeconomic status.

Patient Identification of Diagnostic Safety Blindspots and Participation in "Good Catches" Through Shared Visit Notes.

Policy Points Patients and families can identify clinically relevant errors, including "blindspots"-safety hazards that are difficult for clinicians or organizations to see. Health information transparency, including patient access to electronic visit notes, now federally mandated in the US and the subject of policy debate worldwide, creates a new opportunity to engage patients in diagnostic safety. However, not all patients access notes. Patient identification of blindspots in their notes underscores the need to systematically and equitably engage willing patients in safety, promote patient "good catches," and establish routine systems for patient feedback to help avoid preventable diagnostic errors and delays. CONTEXT: Policy shifts toward health information transparency provide a new opportunity for patients to contribute to diagnostic safety. We investigated whether sharing clinical notes with patients can support identification of "diagnostic safety blindspots"-potentially consequential breakdowns in the diagnostic process that may be difficult for clinical staff to observe. METHOD: We used mixed methods to analyze patient-reported ambulatory documentation errors among 22,889 patients at three US health care centers who read ≥ 1 visit note(s). We identified blindspots by tailoring a previously established taxonomy. We used multiple regression analysis to identify factors associated with blindspot identification. FINDINGS: 774 patients reported a total of 962 blindspots in 4 categories: (1) diagnostic misalignments (n = 421, 43.8%), including inaccurate symptoms or histories and failures or delay in diagnosis; (2) errors of omission (38.1%) including missed main concerns or next steps, and failure to listen to patients; (3) problems occurring outside visits (14.3%) such as tests, referrals, or appointment access; and (4) multiple low-level problems (3.7%) cascading into diagnostic breakdowns. Many patients acted on the blindspots they identified, resulting in "good catches" that may prevent potential negative consequences. Older, female, sicker, unemployed or disabled patients, or those who work in health care were more likely to identify a blindspot. Individuals reporting less formal education; those self-identifying as Black, Asian, other, or multiple races; and participants who deferred decision-making to providers were less likely to report a blindspot. CONCLUSION: Patients who read notes have unique insight about potential errors in their medical records that could impact diagnostic reasoning but may not be known to clinicians-underscoring a critical role for patients in diagnostic safety and organizational learning. From a policy standpoint, organizations should encourage patient review of visit notes, build systems to track patient-reported blindspots, and promote equity in note access and blindspot reporting.

Pathways to cures for multiple sclerosis: A research roadmap.

BACKGROUND: Multiple Sclerosis (MS) is a growing global health challenge affecting nearly 3 million people. Progress has been made in the understanding and treatment of MS over the last several decades, but cures remain elusive. The National MS Society is focused on achieving cures for MS. OBJECTIVES: Cures for MS will be hastened by having a roadmap that describes knowledge gaps, milestones, and research priorities. In this report, we share the Pathways to Cures Research Roadmap and recommendations for strategies to accelerate the development of MS cures. METHODS: The Roadmap was developed through engagement of scientific thought leaders and people affected by MS from North America and the United Kingdom. It also included the perspectives of over 300 people living with MS and was endorsed by many leading MS organizations. RESULTS: The Roadmap consist of three distinct but overlapping cure pathways: (1) stopping the MS disease process, (2) restoring lost function by reversing damage and symptoms, and (3) ending MS through prevention. Better alignment and focus of global resources on high priority research questions are also recommended. CONCLUSIONS: We hope the Roadmap will inspire greater collaboration and alignment of global resources that accelerate scientific breakthroughs leading to cures for MS.