Reading the earliest signs of Alzheimer’s disease

By scouring thousands of electronic health records, Biogen team finds early symptoms often not recorded

By Nancy Maserejian
Director, Epidemiology

July 17, 2017

For patients and families who experience the devastating effects of Alzheimer’s disease (AD), the condition’s earliest signs are often recognized years before its clinical diagnosis. What is less clear, however, is whether these initial symptoms are routinely detected and recorded by healthcare providers. Biogen has been exploring this area as part of a larger effort to understand how AD patients interact with the healthcare system early in the course of their disease. We believe evaluating patients for cognitive impairment and determining their cognitive status should be a fundamental component of medical care — regardless of whether disease-modifying therapies are available or not.

Recognizing the early signs of AD
Previous research has shown that AD patients exhibit signs of mild cognitive impairment an average of three years prior to receiving a formal disease diagnosis. That includes complaints of forgetfulness, difficulty concentrating or focusing, as well as other declines in cognition and memory. Patients may also experience behavioral problems, such as agitation, irritability, and even increased apathy —both as part of the disease itself as well as a reaction to their own declining health.

To determine how effectively physicians and other healthcare providers are recognizing these early signs, we analyzed the provider notes from electronic health records (EHRs) of nearly 50,000 patients who received a diagnosis of AD between January 2007 and March 2016. We focused our analysis on the five-year period preceding diagnosis. The work was done using a de-identified EHR database  licensed from Optum Life Sciences that maintains EHR data on some 69 million patients across the U.S.

Early signs often go unreported
We discovered that for many AD patients, the early signs of their disease go unreported by healthcare providers. For example, two to five years before AD diagnosis, more than 60 percent of patients lacked any provider note regarding memory, behavior, or cognitive issues. This situation improves in the years and months leading up to AD diagnosis, with provider notes including increasing mentions of related symptoms. For instance, we found that 3 months to 2 years prior to AD diagnosis, 41 percent had memory issues, 34 percent had behavioral complaints, and 24 percent experienced cognitive problems. However, nearly half of patients still lacked such notes.

A vision for early detection, early treatment
Our findings, presented at the 2017 Alzheimer’s Association International Congress (AAIC) in London, begin to highlight some of the real-word gaps in assessing and documenting the early signs of AD, and suggest the need for increased education and training about the value of early screening and detection of AD. Although there are currently no therapies that can slow or halt its progression, there are treatments available that can provide some symptomatic relief and may make patients feel better. Importantly, novel therapeutic development in AD is a goal here at Biogen as well as other biopharmaceutical companies worldwide — and our hope is that there will be a day when early detection can be paired with early, effective treatment.

Leveraging EHRs in AD research is a fairly new approach, and Biogen is helping to create a path forward in mining these valuable data. AD is just one of our areas of focus; we are also exploring key questions in other important disease areas, such as multiple sclerosis, lupus, Parkinson’s disease, as well as other neurodegenerative diseases. These massive data sets provide hope in our quest to understand — and hopefully help improve — patients’ journeys through the healthcare system.

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