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 (V-PREG). 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.

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.

Click the link to view the Vasculitis Family Planning Birth Control Handout.

Agreement to Join the

Vasculitis Pregnancy Registry (V-PREG)

V-PREG 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 V-PREG 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 V-PREG.

By joining the Vasculitis-Pregnancy Registry research study, you can help researchers learn more about how vasculitis impacts pregnancy and vice versa.

Goal of the Study

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.

Who Can Participate?

Patients who are currently pregnant and over 18 years of age.

When you join V-PREG, you will be asked to…

  • Answer questions about your health, medications, and reproductive history.
  • It may take from 5 to 30 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.

What you  need to know

  • 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.

Privacy Information

The only risk of joining the V-PREG is risk to your privacy, similar to that encountered through everyday use of the internet. Click on each link below and read the information before you decide to join.

  • What information will V-PREG collect?
  • How will V-PREG use my information?
  • Can I access information that I provide to the VPPRN?
  • Will my information be shared?

By clicking “Join the Study” you consent to participate in the V-PREG Registry and authorize use and disclosure of protected health information.

Contact V-PREG at [email protected] if you have questions about the V-PREG Study.

Interested in other research opportunities?

Join the Vasculitis Patient-Powered Research Network today.