DATAcc by DiMe Launches Core Digital Measures for Alzheimer’s Disease and Related Dementias

Core measures and resources will help advance research and care for millions of people

BOSTON, Nov. 14, 2024 /PRNewswire/ — Today, the Digital Health Measurement Collaborative Community (DATAcc) by the Digital Medicine Society (DiMe) released a core set of digital measures and resources for Alzheimer’s disease and related dementias (ADRD) aimed at advancing clinical research, treatment, and patient care for those affected by ADRD. Addressing a critical need in the research community, including the historical underrepresentation of diverse populations in clinical studies, these measures will help standardize digital endpoints, foster collaboration, and enhance the understanding of the impacts of ADRD to more quickly lead to improvements in patient care.

ADRD represents a significant and growing global health challenge, impacting 47 million people worldwide today, with cases projected to double every 20 years. In addition, the burden of care is increasingly complex for individuals with ADRD, with 95% of ADRD patients facing additional chronic conditions that complicate their treatment. Digital measures offer enormous promise to bolster the collective understanding of ADRD, and subsequently, the development of new therapies and treatments for patients.

There is already huge adoption of digital endpoints across clinical trials. To date, 76 sponsors have collected nearly 500 digital endpoints, and research shows significant financial benefits of using digital endpoints in clinical trials. Despite the prevalence of ADRD and challenges associated with ADRD research and care, utilization of digital technologies in ADRD research has been limited, and more work is needed to better equip stakeholders with tools to understand meaningful aspects of patient health and disease progression.

The resources launched today provide tangible tools for researchers, developers, regulators, and clinicians to meaningfully address this gap and improve the lives of ADRD patients. Resources include: ontologies and terminologies for four core digital measures, templates to standardize the rationale for the use of the core measures, a guide to help with the use of the core measures, and a library of digital health technologies to use to implement the core measures.

“The Core Digital Measures of ADRD are essential to ensure that ADRD research and care is focused on the aspects of health that matter most to people with ADRD and the people who care for them,” said Jennifer Goldsack, CEO of DiMe. “One of the key challenges in developing better therapies for ADRD is a lack of highly relevant, patient-centric measures that enable us to understand the patient’s experience and the impact of new interventions and therapies on their symptoms. In particular, measures that can be captured over time as the disease progresses and the patient population becomes increasingly unable to report their insights and fully express their experience and needs. Digital tools are the solution – they offer a powerful way to quantify the patient experience and advance research that truly supports the unique needs of diverse communities affected by ADRD.”

By developing core digital measures in a pre-competitive cross-disciplinary collaboration, we are de-risking and driving broader adoption of digital technologies, while increasing the speed and reducing the costs of research. And further, by standardizing these digital measures across trials, we can streamline research processes, recruit more diverse patient populations, and generate higher-resolution data. This will lead to faster, more cost-effective trials that provide insights into how different communities experience ADRD and respond to treatments, ultimately driving better therapies for ADRD and improving the lives of patients and their care partners.

“The launch of the Core Digital Measures of ADRD opens the door to comparing trial data in ways that were previously unattainable,” said Dr. Howard Fillit, Co-Founder and Chief Science Officer, Alzheimer’s Drug Discovery Foundation. “If these resources are widely adopted, it will improve our ability to enhance comparability between other trials, make timely, well-informed decisions, and streamline preparation for phase 3 trials. These resources have the potential to enhance the efficiency of our research and enable us to better understand and address the specific needs of those impacted by ADRD.”

As the global home for digital measures development, DATAcc by DiMe is working to advance digital endpoints in research and patient care. In the weeks ahead, DATAcc by DiMe will launch two new projects to 1) develop core measures for pediatric rare disease, and 2) leverage continuous glucose monitoring to improve market access for effective diabetes therapies and treatment pathways. Click here to learn more or to join us!

About the Digital Medicine Society: DiMe is a global non-profit and the professional home for all members of the digital medicine community. Together, we tackle the toughest digital medicine challenges, develop clinical-quality resources on a technology timeline, and deliver these actionable resources to the field via open-source channels and educational programs.

About DATAcc by DiMe: The Digital Health Measurement Collaborative Community (DATAcc) by DiMe is a collaborative community with the FDA’s Center for Devices and Radiological Health. We provide a forum for collaboration where partners and experts from across the digital health field work to advance the use of digital health measures in research to improve lives.

Media Contact: Carla English, press@dimesociety.org

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SOURCE Digital Medicine Society (DiMe)