Vasculitis encompasses several rare conditions that are characterized by inflammation of blood vessels. The rarity of these conditions can make research studies challenging. Additionally, studies in vasculitis require collaboration between multiple centers which can further add to the cost, recruitment, and logistics.

The Vasculitis Patient-Powered Research Network (VPPRN) was established to address these issues and provide a more feasible and sustainable method to conduct research.

Validation of Patient-Reported Diagnosis of Vasculitis
Recruitment Closed

Thank YOU for being a member of the VPPRN!

The VPPRN research team wants to thank you for your contribution to this important vasculitis research by being a member of the VPPRN. As a member of the VPPRN, you have shared your disease experience by providing self-reported data through our online surveys. This information is helping to improve the understanding of vasculitis and advance vasculitis research.

More Ways to Help

We are launching a new study to address a critical need for the VPPRN and other online patient-reported registries like it. Read more about the study below.

New VPPRN Study to Address the Challenge of Patient-Reported Diagnosis Validation

The Challenge: Need for Confirmation

The validity of self-reported diagnosis is unknown

With registries like the VPPRN, it is possible to assemble individuals with rare diseases through web-based registries. However, there is a critical need to confirm the self-reported diagnoses in patients with vasculitis and determine self-reported characteristics associated with a higher or lower probability of the disease.

The Solution: Your Participation 

We Need Additional Information About Your Diagnosis

By providing information to the VPPRN about your symptoms, diagnosis, and ongoing disease activity you are increasing knowledge about vasculitis. Our research team needs some additional details about your diagnosis of vasculitis from your doctor. All we need is a copy of your diagnosis from your doctor.

About the Study

Goals of the Study

  1. To evaluate the accuracy of patient-reported diagnoses of vasculitis in the VPPRN.
  2. To explore novel methods to provide a feasible approach to diagnostic confirmation for use in future patient-reported registries like the VPPRN.

What is Involved

Our research team needs some additional details about your diagnosis of vasculitis from your doctor.  We know your time with your doctor is very important; we also recognize that your doctor is busy.  That is why we’ve made it easy and for both you and your doctor to provide us the necessary information.
If you choose to participate in this study, we will ask you permission to contact your main doctor treating your vasculitis to obtain information about your diagnosis. We may also request medical records if needed.

How to Participate

There are only three simple steps to participate in this study.

  1. CONSENT FORM: Complete the consent form by clicking the “Join the Study” button below to authorize use and disclosure of your medical records with information about your diagnosis of vasculitis for the Validation of Patient-Reported Diagnosis study conducted by the Vasculitis Patient-Powered Research Network.
  2. PHYSICIAN INFORMATION: Provide the current contact information for the main specialist or doctor treating your vasculitis.
  3. DIAGNOSIS FORM RETURN: You will then be given a short form to hand to the physician treating your vasculitis requesting information on your diagnosis and confirmatory testing. This form only has 5 questions for your physician to complete. The letter will have instructions for your physician to return the letter to the VPPRN research team.  In some cases, we may contact your physician directly to ensure the form is returned or to request specific medical records.

Please note, our research team is here to make participation in this study easy for you and your physician. The study coordinator is available for you to contact if you have any questions or concerns. The VPPRN research team, the study coordinator or lead investigators, may also follow-up with your physician to assist with the form return if it is not completed in a timely manner.

By clicking Join the study you consent to participate in the Diagnostic Validation Study through the VPPRN and authorize use and disclosure of protected health information.

Contact the Study Team at [email protected] if you have questions about the study.