140. THE VASCULITIS PREGNANCY REGISTRY (VPREG): BASELINE INFORMATION FOR THE FIRST 3 YEARS

Background: As treatments for vasculitis improve and become less ovarian-toxic, more young women with these diseases will become pregnant. How best to manage these pregnancies remains unclear and, given the rarity of these pregnancies, challenging to study. The Vasculitis Pregnancy Registry (VPreg) is an online, patient-driven prospective pregnancy registry that is designed to collect observational data to increase our understanding of pregnancies in women with vasculitis.

Methods: VPreg is imbedded within the Vasculitis Patient-Powered Research Network (VPPRN), where members are asked to participate in this specific registry during pregnancy. All women indicate informed consent and are invited to complete online surveys at study entry, in each trimester, and post-partum. Women reported pain, overall health, and vasculitis disease activity on a 0-10 visual analog scale with 0 indicating no pain, great health, and no vasculitis activity. Patient reminders are sent via repeated emails and phone calls.

Results: Between 11/2015-12/2018 62 pregnant women with a range of vasculitis diagnoses enrolled in VPreg. Almost all (95%) had been diagnosed with vasculitis prior to conception and 67% had been hospitalized for vasculitis at some point. Twenty-one women reported 52 prior pregnancies. Of these, 44% resulted in a miscarriage, with losses spread fairly even across the vasculitis diagnoses, 1 stillbirth and 1 elective termination. Of 36 pregnancies with data about the 3 months prior to conception, no women were hospitalized, 40% were taking no immunosuppressant medications and only one woman was taking a teratogen (methotrexate). Self-reported vasculitis activity was generally low prior to conception with 83% reporting <3/10 pain, 75% <3/10 overall health, and 82% <3/10 vasculitis activity. Of the 32 pregnancies with first trimester data, 40% were on no immunosuppressants, 72-78% reported <3/10 for pain, overall health, and vasculitis activity, but 2 (6%) were hospitalized for vasculitis. Prednisone was the most commonly prescribed medication.

Conclusion: The women in this cohort report an unusually high rate of prior miscarriage. The majority of the current pregnancies occurred in women with minimal vasculitis activity and off teratogens, suggesting that they were well-timed for success. The main drawback has been the low level of questionnaire completion, despite multiple reminders and phone calls. This approach to a pregnancy registry appears to work to identify rare pregnancies, but may not be effective for collecting outcomes.

Disclosures: This work was supported by the Vasculitis Patient-Powered Research Network and NIH grant AR057319 and PPRN-1306-04758.