Implementation and Evaluation of a Rare Disease Algorithm to Identify Persons at Risk of Gaucher Disease Using Data From Electronic Health Records (EHRs) in the United States (Project Searchlight)
Completed · Not applicable · NCT05908656
Conditions: Gaucher Disease
At a glance
- Research payments reported, 2025
- $369,852
- U.S. investigators named
- 3
- Sites paid
- 3
- Planned or actual enrollment
- 13
About the trial
- Sponsor
- Sanofi
- Tested
- Investigational procedure (procedure)
- Dates
- Started 2024-04-02; completion 2024-08-26
- Results posted
- Not yet
This is a three-phase study comprising both retrospective and prospective components, as follows: Phase I: Deployment of Rare Disease Algorithm: A diagnostic screening algorithm was developed using advanced analytical methods to identify patients who have an increased likelihood of having Gaucher disease. This tool will be applied to a health system's electronic health records (EHR). The top 50 active patients per healthcare system will be identified as "highly ranked by the RDA" and moved to Phase II. As three to four healthcare systems are expected to participate in this study, between 150 to 200 persons are expected to be identified and included in Phase II. Phase II: Retrospective rev…
From ClinicalTrials.gov, last updated 2024-11-19. Full record, eligibility and contacts (opens in a new tab)
Industry funding
Sanofi US Services Inc. reported $369,852 in research payments for this study in 2025 (16 payments).
Products named: Cerdelga
Research payments usually go to hospitals, universities and research sites to run a study, not to the investigators personally. A payment is not evidence of wrongdoing.
U.S. investigators named on this study
- Coy D. Heldermon, MD Medical Oncology · Gainesville, FL
- Alvin F. Wells, MD Rheumatology · Destin, FL
- Maryam Banikazemi, MD Ph.D. Medical Genetics (non-physician) · Valhalla, NY
Clinicians the company named as principal investigators in its Open Payments reports.
Sites paid to run it
- Metropolitan Hospital Center, NY $187,179
- University Florida $158,545
- Aurora Research Institute $24,128
Sources: CMS Open Payments research payments (program year 2025) and ClinicalTrials.gov, U.S. National Library of Medicine.