Jul 1, 2024

AES Comments to NINDS Request for Information on Soliciting Input on Opportunities, Gaps, and Challenges in Global Health Research in Neurological Diseases and Stroke

NINDS released a Request for Information (RFI) titled Soliciting Input on Opportunities, Gaps, and Challenges in Global Health Research in Neurological Diseases and Stroke on May 22, 2024. The information received from comments submitted to the RFI is intended to help NINDS identify global health research priorities, capacity building and training needs, and best practices or strategies that could facilitate equitable global health research in neurological disorders. The NINDS invites input from all stakeholders, including researchers, health care providers, people with lived experience (e.g., patients with neurological conditions, family members, caregivers), patient advocates, health advocacy organizations, scientific or professional organizations, federal agencies, non-profit and private sector organizations, as well as other interested members of the public.

The most impactful research opportunities for addressing global neurological health needs

More than 3 billion people worldwide are living with a neurologic disorder, making it a leading cause of disability and premature mortality. Access to treatment is highly unequal not only in low- and middle-income countries but also within high-income countries. Prevention with health education, timely diagnosis, and appropriate treatment are key factors in reducing the morbidity caused by these disorders. However uniform access to standardized care will play a key role in changing the landscape of Neurology in the world in the upcoming years.

The use of technology in healthcare has exploded in recent years but remains under-utilized. This is in part due to the lack of literature and systematic research on the use of different aspects of technology in bridging access to healthcare.

Systematic research is needed to study the impact of different technological modalities in providing standardized care for neurologic diseases in different low-, middle- and high-income countries.

The aspects that can be further explored include:

  • Telemedicine and Remote Monitoring: Virtual Consultations: Development of platforms for remote neurological consultations to reach underserved areas. Integrate AI-driven diagnostic tools and wearable devices providing longitudinal data to assist neurologists. These platforms can cross geographic barriers and promote collaborations between high- and low-income countries or help outreach in island nations or in healthcare deserts (such as island nations or regions of rough terrain/wars/calamities).
  • Predictive Analytics: Implement machine learning algorithms to diagnose, predict the onset or progression of neurological disorders based on patient data. These can also be used to create user-friendly calculators that can assist professionals in primary care settings.
  • Mobile Health Applications: Creation of mobile apps for patients to track their symptoms, medication adherence, and lifestyle factors, providing valuable data for both patients and healthcare providers. These apps can also offer educational resources and support networks for patients and caregivers dealing with these diseases.
  • Global Research Networks: Formation of research consortia may help sharing data, resources, and findings, fostering collaborative efforts to tackle neurological health challenges.


Challenges to research progress experienced by LMICs and how they can be addressed

People with epilepsy (PWE) in resource‐poor countries do not receive appropriate treatment, a phenomenon referred to as the epilepsy treatment gap. The effectiveness of evidence-based interventions and their ability to reach relevant populations in low or middle-income countries (LMIC) is critically influenced by their contextual design and implementation.


Strategies to build and improve sustainable neurological research capacity at LMIC academic/research institutions, including for basic, translational, and clinical research 

  • Involve local communities in the research process from the earliest planning stages of research (includes consulting with community leaders, stakeholders, and potential participants to understand their needs, priorities, and challenges).
  • Address power imbalances and mitigate imbalances through equitable partnerships and inclusive decision-making processes.
  • Invest in building local research capacity by providing training, mentorship, and resources to researchers and institutions in LMICs. This empowers local researchers to lead and conduct research that is relevant to their communities.
  • Ensure research respects local cultural norms, values, and practices, and that participants' rights are protected.
  • Promote open science and data sharing.


The most important training needs and/or most promising training approaches in global neurological research, including how best to support a pipeline of trained scientists and health professionals in neuroscience

Factors contributing to the epilepsy treatment gap that have been identified include:

  • Lack of knowledge about the causes, treatment,and prognosis of epilepsy.
  • Inaccessibility to anti-seizure medications (ASMs).
  • Misconceptions about epilepsy derived from superstitions about its origin.
  • Dissatisfaction with the communication skills of health providers.


Possible interventions:

  • Education and support for PWE and their caregivers.
  • Communication skills training for health providers.
  • Improved drug provision.


Strategies to promote mutually beneficial research partnerships among LMICs and HICs as well as other external stakeholders

The nuance of what determines a "HIC" seems to be missing. Many Small Island States, with incomes over $13,000, are considered high income and in the same bracket as the USA, UK, and Canada, with yearly incomes above $44,000. Apart from size, they have the exact same struggles as LMIC and are burdened with being forgotten at both ends. Targeting projects to LMIC and HIC per definition omits countries that are HIC by those standards but have major underserved populations/areas (LMIC within an HIC).


The most impactful social and/or other determinants of health that affect LMICs and how they can be addressed to improve neurological health outcomes

Decreasing epilepsy and comorbidity burden in LMIC is essential to improving quality of life for PWE. The effectiveness of evidence-based care interventions and their ability to reach relevant populations in LMIC is critically influenced by their contextual design and implementation. Approaches that leverage the experiences of patients, caregivers, healthcare providers, and the community to co-produce contextually based interventions and co-designed systems of delivery hold potential for catalyzing change that will allow for improved health outcomes and quality of life for people with epilepsy in resource-poor environments.