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How Real World Data Revealed the Need for Broad HCP Education of Frontotemporal Dementia

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By: Dan Fisher, Principal, IPM.ai

The Challenge  

Frontotemporal dementia (FTD) is the most common form of dementia experienced by people under the age of 60.[1],[2] The age of symptom onset varies widely, occurring anywhere between the ages of 17 to 91 years.[3] FTD is believed to be under-diagnosed, as health care professionals (HCPs) could misdiagnose the syndrome as other types of dementia or primary psychiatric disorders – because of this lack of knowledge about FTD, there’s a consensus that it’s more prevalent than records indicate.[2],[4],[5],[6] To better understand the patient journey, Alector® wanted to identify FTD-diagnosing HCPs and gain insight into diagnosis trends and patterns.*

The Solution 

IPM.ai relied on a vast universe of privacy-safe real-world data – containing over 300 million de-identified patients – to uncover all patients with an FTD diagnosis code between 2008 and 2021, along with their diagnosing physicians as indicated by medical claims data.

The Outcome 

A total of 26,155 HCPs were identified based on their unique National Provider Identifier (NPI), with their provider specialty sourced from the National Plan and Provider Enumeration System (NPPES) registry. Findings revealed that diagnoses were documented across specialties, though the majority were by HCPs practicing family medicine or internal medicine (72%); this was followed by neurologists (15%), emergency medicine (5%), psychiatrists (4%), and geriatric medicine (4%). FTD-diagnosing HCPs were divided into quartiles based on the total number of FTD diagnoses made in the most recent 12-month period. The top quartile averaged 12 FTD patients diagnosed annually, with neurologists comprising the greatest percentage (39%) of HCP specialties.

Recognizing the heterogeneity of HCP specialties exposed to FTD patients, it’s apparent that broad education on diagnosis, familial components and clinical trial options need to be made available to a wider audience of HCPs outside of neurologists.

*This case study is derived from a research project conducted by IPM.ai, which was funded by Alector, Inc., and published in Alzheimer's & Dementia®, Volume 18, Issue S8, "Analyzing Medical Claims Data to Identify Health Care Provider Specialties Diagnosing Frontotemporal Dementia."

[1] Greaves CV, Rohrer JD. J Neurol. 2019;266(8):2075-2086.

[2] Ducharme S, et al. Brain. 2020;143(6):1632-1650

[3] Moore KM, et al. Lancet Neurol. 2020;19:145-156

[4] Finger EC. Frontotemporal Dementias. Continuum (Minneap Minn).

2016;22(2 Dementia):464-489.

[5] Onyike CU, Diehl-Schmid J. Int Rev Psychiatry. 2013;25(2):130-137.

[6] Woollacott IO, Rohrer JD. J Neurochem. 2016;138 Suppl 1:6-31.

About the Author

Dan Fisher

Principal, IPM.ai 

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As Principal for IPM.ai, Dan leads a team that utilizes machine learning, artificial intelligence and advanced analytics to deliver valuable insights that guide and accelerate the clinical and commercial decisions of life sciences companies. With a focus on specialty markets, Dan’s deep expertise in rare disease and oncology disease states helps biopharma clients better understand and more effectively uncover ideal patients and their health care providers. Prior to joining IPM.ai, Dan led commercial operations and clinical analytics projects for ZS Associates. He holds a Master of Business Administration (MBA) from Vanderbilt University.

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