Agreement to Participate in the Vasculitis Patient-Powered Research Network (VPPRN)
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. 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.
When you join the VPPRN, you will be asked to…
(“You” means you, your child or the person for whom you are providing care)
Agree to English proficiency requirements
The VPPRN forms are currently provided in English only and require a strong English proficiency. By signing this consent form, you are acknowledging that all our forms and medical terminology used are in English.
Tell us about yourself
Provide information about yourself, your diagnosis and treatment, and how vasculitis impacts your life.
We will need you to periodically update your information so that we have your latest data and contact information.
Agree to let us contact you
We plan to give you opportunities to participate in studies that may lead to improved care and outcomes for patients with vasculitis.
By joining the VPPRN, you will also automatically be enrolled in the
Vasculitis Clinical Research Consortium (VCRC) Patient Contact Registry
which connects patients with opportunities to participate in clinical research trials and experts in vasculitis.
Participation is completely voluntary and you may choose to withdraw at any time. We hope that you choose to stay an active participant in the research to help improve care for people with vasculitis.
The VPPRN will…
Respect Your Privacy
The information you provide us will be kept confidential and secure to the extent permitted by law. The VPPRN will never sell, rent, or lease your contact information. Please see the VPPRN
for additional information.
The VPPRN follows all federal, state, and local guidelines regarding patient protection, including HIPAA.
Keep You Informed
We will give you feedback and share what we learn about vasculitis. All the information you provide may help us learn more about vasculitis.
We will also keep you informed about new research opportunities that arise within the Network.
Make Participation Easy
Updates may be entered directly by you or, with your permission, directly from your healthcare provider.
There are no costs or any unanticipated risks associated with participation in the VPPRN.
By clicking "Accept" you consent to participate in the VPPRN.
By clicking "Decline" you do not consent to participate but wish to help in another way.
the VPPRN Network Manager
Kalen Young, VPPRN Network Manager
The VPPRN is sponsored by the Patient Centered Outcomes Research Institute (PCORI), the Vasculitis Clinical Research Consortium (VCRC) and the Vasculitis Foundation patient advocacy group.