Identification of Patients Diagnosed with Rare and Emerging Diseases Utilizing the Trinetx Network: A Case Study of African and American Trypanosomiasis

Author(s)

Brauneis J1, Madaj K2, Menon J3, Seshadri V1, Buysse B4
1Syneos Health, Morrisville, NC, USA, 2Syneos Health, UNIONTOWN, OH, USA, 3Syneos Health, Aarhus, Denmark, 4Syneos Health, Farnborough, UK

OBJECTIVES: Due to large sample sizes, electronic medical records (EMR) databases have the potential to provide pivotal insights into patients diagnosed with rare, orphan, or emerging diseases. This study aimed to explore the patient profile of African and American trypanosomiasis, both vector-borne parasitic diseases, pre-and post the COVID-19 pandemic using the TriNetX Network.

METHODS: From Jan 1, 2018 Nov 30, 2019 (pre-COVID) and Jan 1, 2020 – Nov 30, 2021 (post-COVID) patients were queried from the TriNetX Global health research network, inclusive of 88 million patients from the United States (US), Europe, the Middle East, Africa, Latin America, and Asia Pacific. Eligible patients with an ICD-10 diagnosis code of African trypanosomiasis or American trypanosomiasis were identified (2280 patients on 22-Dec-2022) and analyzed separately, pre- and post-COVID.

RESULTS: We identified 340 patients pre- and 960 patients post-COVID with African trypanosomiasis and 960 patients pre- and 190 patients post-COVID with American trypanosomiasis. Most patients resided in the US. Pre-COVID African trypanosomiasis patients had a mean age of 38 and were 59% female while post-COVID patients had a mean age of 34 and were 57% female. Pre-COVID American trypanosomiasis patients had a mean age of 49 and were 57% female while post-COVID patients had a mean age of 49 and were 53% female. Top co-diagnoses included diseases of the respiratory (85%, 84%) and nervous systems (82%, 79%) for patients with African trypanosomiasis and diseases of the digestive (69%, 54%) and circulatory systems (68%, 61%) for patients with American trypanosomiasis in both the pre- and post-COVID cohorts, respectively.

CONCLUSIONS: Using real-world EMR data we were able to obtain patient profiles for a rare disease (African trypanosomiasis) and a common, emerging disease (American trypanosomiasis). This information supports utilizing EMR data for describing patient populations in rare, orphan, or emerging diseases, which may aid drug development for these indications.

Conference/Value in Health Info

2023-05, ISPOR 2023, Boston, MA, USA

Value in Health, Volume 26, Issue 6, S2 (June 2023)

Code

SA63

Topic

Study Approaches

Topic Subcategory

Electronic Medical & Health Records

Disease

Rare & Orphan Diseases

Your browser is out-of-date

ISPOR recommends that you update your browser for more security, speed and the best experience on ispor.org. Update my browser now

×