Vasculitis Pregnancy Registry
Finding Answers, Finding Hope.
One of the most common questions women with vasculitis ask is how this disease will affect their ability to have children. Unfortunately, there is very limited reliable information regarding pregnancy and women with vasculitis. This is a great concern for both patients and physicians.
The outcome of pregnancies in women with vasculitis is unknown and the reproductive health of women with vasculitis has not been studied extensively, until now!
The VPPRN is pleased to be working with Megan E. B. Clowse, MD, MPH from Duke University Medical Center to launch the Vasculitis Pregnancy Registry (VPREG). Dr. Clowse’s clinical research focuses on the management of rheumatic diseases in pregnancy. She has cared for over 600 pregnancies in women with rheumatic disease. This registry will be collecting information to help find answers to how vasculitis impacts reproductive health and pregnancy outcomes.
Family Planning & Birth Control
We are excited to introduce the release of our new handout designed for our patients who have questions about family planning and birth control.
The two-page handout is intended to offer a reference for patients to use when talking with their health care providers about these important issues.
The handout was developed by Dr. Clowse and Catherine Sims, MD, a second-year fellow at Duke University’s School of Medicine, Division of Rheumatology.
Agreement to Join the
Vasculitis Pregnancy Registry (VPREG)
VPREG is run through the Vasculitis Patient-Powered Research Network (VPPRN). The goal of the VPPRN’s research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis.
When you join VPREG you will have the opportunity to enroll in the VPPRN patient registry as an ongoing participant if you so choose. You are NOT automatically enrolled in the VPPRN if you join VPREG.
By joining the Vasculitis Pregnancy Registry research study, you can help researchers learn more about how vasculitis impacts pregnancy and vice versa.
The primary objective of this study is to understand pregnancy characteristics and outcomes among women with vasculitis.
The secondary objective is to assess the impact that vasculitis activity and medical therapy has on pregnancy outcomes.
Patients who are currently pregnant and over 18 years of age.
- Answer questions about your health, medications, and reproductive history.
- It may take from 5 to 10 minutes to answer the questions on the surveys.
- Take a form to your doctor so he/she can provide information about your health including your diagnosis and medications.
- Take a form to your doctor after you deliver so he/she can provide information about your delivery and your baby’s health.
- Your information will be stored in our secure database and kept confidential to the extent permitted by law.
- Taking part in the study is your choice.
- You can withdraw from the study at any time.
- Your decision whether or not to take part in the study will not change your medical care or benefits.
The only risk of joining the VPREG is risk to your privacy, similar to that encountered through everyday use of the internet.
Click HERE to review the VPPRN privacy policy that will help answer any questions you may have before joining this study, such as:
- What information will VPREG collect?
- How will VPREG use my information?
- Can I access information that I provide to the VPPRN?
- Will my information be shared?
Questions about the Vasculitis Pregnancy Registry (VPREG)? Want more information?
Please contact Christine Yeung at [email protected] for assistance.
By clicking “Join the VPREG Study” button below, you consent to participate in the VPREG Registry and authorize use and disclosure of protected health information.
Resources and References
There are limited data on reproductive outcomes in patients with vasculitis. The Vasculitis Pregnancy Registry (VPREG) was developed to better understand the relationship between vasculitis and pregnancy and to answer the question: how does vasculitis impact reproductive health.
Thanks to the participation and data provided by patients, the VPREG Study Team published two manuscripts from the VPREG study in the Journal of Rheumatology, one focusing on the quantitative data and the other based on interviews from a small cohort of VPREG participants. These are provided below.
Reproductive Outcomes for Women with Vasculitis
STUDY AIMS
Study Aims: To help us better understand the following:
- Do women with vasculitis experience increased patient reported vasculitis activity during pregnancy?
- Do women with vasculitis experience pregnancy complications and poor pregnancy outcomes?
PARTICIPANTS
Participants: 147 women enrolled in VPREG participated this study. Most forms of vasculitis were represented
KEY CONCLUSIONS
Key Conclusions: Most patients experienced live births with healthy infants at full term without a vasculitis flare or need for hospitalization.
Exploring Reproductive Experiences with Women Enrolled in the International VPREG Registry
STUDY AIMS
Study Aims: To explore the reproductive journeys of patients with vasculitis, including their conversations with healthcare providers, disease activity, medication changes, and delivery experiences
PARTICIPANTS
Participants: 18 women enrolled in VPREG agreed to participate in an hour-long interview discussing their experiences with pregnancy.
KEY CONCLUSIONS
Key Conclusions: Four major themes identified during these interviews demonstrate common experiences among these women:
- Women sought information about pregnancy from many sources (family, physicians, online resources).
- Most women with vasculitis had successful pregnancies.
- Women relied on conversations with family and physicians to decide about medications for vasculitis during pregnancy.
- Women used self-advocacy during pregnancy to optimize communication between medical providers.
