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TSF website now hosts patient-friendly summaries of research publications

Posted by: The Sumaira Foundation in News & Announcements

January 26, 2024 — At TSF, we believe in the power of medical research for achieving breakthroughs toward better patient quality of life. In line with this ideology, many of our advocacy efforts are grounded in furthering and amplifying high-quality research in the field. Our Medical Advisory Board and Research Grants and Special Issues to support new cutting-edge research stand testimony to this fact.

We are therefore very proud and excited to announce our latest initiative, Research Summaries. Under this initiative, we will be highlighting some of the most promising journal publications related to NMOSD and MOGAD, along with short summaries in patient-friendly plain language. 

Leading this initiative is Clarinda Cerejo, TSF Ambassador of India. As a certified Patient Expert, with over 17 years of experience in science communication, Clarinda is passionate about making dense technical medical research accessible to patients.

Our Medical Advisory Board fully endorses this initiative, and this is what Michael Levy, our Board Chairman, has to say about it, “In rare diseases like NMOSD and MOGAD, research developments signify great hope and promise. So for clinical researchers, it is very important that patients get informed about the latest research developments. Unfortunately, it is very difficult for patients to access and understand research papers. We hope that this new TSF initiative will help bridge this gap and empower patients to ask their neurologists questions about the latest research and treatments. This could lead to a new era of shared decision-making for these diseases.”

The papers included in the Research Summaries webpage have been carefully selected on the basis of their relevance to patients and their potential to transform patient care. The papers have been categorized by disease and sub-categorized by topics, such as, Disease Overview, Diagnosis, Treatment, Quality of Life, and Long-term Outcomes. Patients may select the disease and topic of interest to view relevant papers. 

This page is a work-in-progress, and as the body of evidence continues to grow, we will add features and enhancements to improve the overall end user experience. We encourage our readers and collaborators to explore our Research Summaries page and share feedback on papers to be added and potential enhancements that would make this page more user friendly.

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