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SDS & Science Snapshots (2024-01-20)

In this issue: FasterCures investigates patient preferences in the development of new cancer screening technologies

Welcome to our timely updates on all things SDS, Science, and Advocacy. We bring you a digest of recent scientific publications, conferences, and other newsworthy content - all relevant to SDS - with links to more details and learning opportunities. Are you interested in anything specific? Did we miss something? Let us know. Email genetics@SDSAlliance.org or message us on Facebook! This is all for you!



New Study Investigates Patient Preferences in the Development of Cancer Screening Technologies


FasterCures, a center of the Milken Institute, works to build a system that is effective, efficient, and patient-centered with focus areas in accelerating innovation, building nonprofit capacity, improving the research and development environment, and strengthening global health.


Additionally, FasterCures works to embed the experiences and preferences of patients across the biomedical ecosystem to address patient needs and improve outcomes.

With this in mind, last fall, FasterCures published a study, The Impact of Insight: Patient Preferences in Novel Screening Technologies for Cancer, exploring patient preferences in cancer screening and early interventions with the goal of informing current patient care guidelines and the development of future cancer screening technologies and interventions.




As a side note, our CEO Dr. Eszter Hars, had the privilege to participate in the latest cohort of the Milken Institute FasterCures LeadersLink Program and recently completed a capstone project centered around patient data resources. More about this project coming soon.


What This Study Found


As screening technologies advance and detect cancer earlier, it is imperative that the development process for early intervention modalities includes patient insights. The incorporation of patient preferences into the development and advancement of early intervention technologies and treatments are equally important.


Based on their extensive research and engagement with stakeholders, this study identified the following patient preferences in cancer screening, early detection, and interventions:




This study also identified several key issues with the development of new cancer screening and early intervention modalities including:


  • Unawareness of Individual Risk of Cancer and Recommended Screenings

  • Lack of Diversity in Research

  • Limited Access to Screening Tests

  • Lack of Patient Engagement in the Development of Medical Products

  • Limited Capabilities of Current Screening Tests


To address these issues, the authors recommended multiple calls to action, encouraging patient insights to be actionably embedded throughout the research, development, and implementation of cancer screening and early intervention tools. Some of these calls to action include:


  • Invest in research to better understand the biology of cancer,

  • Stratify cancer screening recommendations based on genetic risk, lifestyle, and behavior,

  • Increase the use of genetic testing to create personalized screening plans for individuals with a family history of cancer,

  • Ensure clinical trials for new technologies include participants from diverse communities,

  • Invest in accessible screening technologies and/or initial, self-administered screenings in the home,

  • Continue to engage patients in the development of new screening technologies and early interventions for cancer treatment, and

  • Prioritize the development of screening technologies for lethal cancers and cancers without current screenings.


What Does This Mean for You?


While we recognize there is more complexity to SDS than its cancer risk and developing and implementing appropriate cancer screening recommendations, this study serves as a great example of the unique needs and preferences that exist amongst different disease communities. SDS Alliance is committed to not only responding to these authors’ calls to action, but also to exploring and incorporating the needs and preferences of the SDS community when establishing our research priorities and designing clinical trials. Together, we can improve outcomes and find a cure for SDS!

Make your voice heard: Engage, share your story, and get involved in advocacy.


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The Science Snapshot this week contains content modified from materials distributed by the Milken Institute and FasterCures.




The Impact of Insight: Patient Preferences in Novel Screening Technologies for Cancer


Milken Institute: FasterCures


In Partnership With: The Rising Tide Foundation


September 21, 2023



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