Diagnostic Validation
Validation of Patient-Reported Diagnosis of Vasculitis
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. 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.
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.
Recruitment for this Study is Closed
About the VPPRN Diagnostic Validation 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.
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.
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.
Our research team is here to make participation in this study easy for you.
The study coordinator is available for you to contact if you have any questions or concerns. Contact Christine Yeung from the Study Team at [email protected] with questions about this study.
Not a Member of the VPPRN?
If you aren’t a member of the Vasculitis Patient-Powered Research Network (VPPRN), we invite you to join today!
We want to understand your individual patient experience. We will learn about individual patient experiences by collecting data you provide. We’ve made it easy for you to contribute this data to make vasculitis research happen now.
Questions? Please contact Christine Yeung, the VPPRN Network Manager at [email protected].
Interested in Other Research Opportunities?
The goal of the VPPRN 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.
Learn about current opportunities to participate in research
