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.
The VPPRN is an online, highly-functional and successful registry that conducts patient-centered clinical research. The VPPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis.
Thank YOU for being a member!
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.
Validation of Patient-Reported Diagnosis of Vasculitis
New VPPRN Study to Address the Challenge of Patient-Reported Diagnosis Validation
The validity of self-reported diagnosis of vasculitis is unknown.
Need for Confirmation
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.
You have something we need to address the challenge of confirmation!
The Solution: Your Participation
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
About the Study
Goals of the Study
- To evaluate the accuracy of patient-reported diagnoses of vasculitis in the VPPRN.
- 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
How to Participate
We know your time with your doctor is very important. We also recognize that your doctor is busy. There are only three simple steps to participate in this study.
- 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.
- PHYSICIAN INFORMATION: Provide the current contact information for the main specialist or doctor treating your vasculitis.
- 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.