Identifying and tracing a population at risk: the DESAD Project experience

Area of Science:

• Medical record analysis
• Public health initiatives
• Pharmacoepidemiology

Background:

• Medical record review is increasingly used to identify patients eligible for alerts regarding newly discovered drug side effects.
• The Diethylstilbestrol-Adenosis (DESAD) Project aimed to identify and notify women exposed to diethylstilbestrol (DES) in utero, highlighting the complexities of such public health efforts.

Purpose of the Study:

• To evaluate the challenges and effectiveness of identifying and notifying individuals exposed to diethylstilbestrol (DES) in utero through medical record review.
• To inform recommendations for improving future patient notification systems for treatments with newly discovered adverse effects.

Main Methods:

• Review of 221,245 medical charts to identify 4,830 women exposed to DES.
• Detailed tracing data analysis from a participating DESAD Project center to assess notification rates.

Main Results:

• The DESAD Project identified 4,830 DES-exposed women through extensive medical record review.
• At one center, only 85% of the 690 identified DES-exposed women could be successfully notified.

Conclusions:

• Identifying and notifying patients with historical exposures, such as in utero DES exposure, is a complex and challenging task.
• The DESAD Project experience necessitates recommendations for standardized records, improved data storage, updated legal frameworks, and enhanced follow-up procedures, while respecting patient privacy.