Identifying Barriers to Enrollment in Patient Pregnancy Registries: Building Evidence Through Crowdsourcing

Area of Science:

• Reproductive Health
• Rheumatology
• Pharmacovigilance

Background:

• Pregnancy registry enrollment faces challenges due to low recruitment and limited safety data.
• Crowdsourcing offers a promising approach to enhance patient engagement and gather insights for improving enrollment.
• Understanding patient and physician perspectives is crucial for facilitating participation in pregnancy registries.

Purpose of the Study:

• To assess awareness of the Belimumab Pregnancy Registry (BPR) among patients and physicians using web-based crowdsourcing.
• To identify barriers to BPR enrollment using the registry as a case study.

Main Methods:

• Two distinct web-based crowdsourcing surveys were conducted: one for patients (n=151) and one for rheumatologists (n=169).
• Patient eligibility included women aged 18-55 with SLE, who were pregnant, recently pregnant, or planning pregnancy.
• Rheumatologist eligibility included those who had prescribed belimumab and treated pregnant women; responses were descriptively analyzed.

Main Results:

• Moderate awareness of the BPR was found: 51% of surveyed patients exposed to belimumab and 45.5% of rheumatologists were aware.
• A significant proportion of patients (60%) discontinued belimumab due to pregnancy.
• Rheumatologists cited unknown pregnancy safety profile as a primary concern for not prescribing belimumab during pregnancy.

Conclusions:

• Crowdsourcing effectively gathered patient and rheumatologist input regarding the BPR.
• Some patients with SLE continue belimumab during or when planning pregnancy.
• Moderate BPR awareness suggests opportunities to improve patient and physician engagement for enhanced enrollment.