Vasculitis Patient-Powered Research Network
A partnership of the Vasculitis Clinical Research Consortium and the Vasculitis Foundation

Privacy Pledge

The V-PPRN is firmly committed to protecting your data and privacy. We understand that medical information about you, and your health, is personal. All information you share with us will be strictly confidential and you control the amount of information we receive about you. If you choose to interact with the V-PPRN, you have our pledge to protect your data and privacy.

Your Privacy Is Our Priority

The V-PPRN comes with these important privacy assurances:

  • Personal data and health information are stored on a secure computer server
  • Personal data will not be sold, rented, or leased without your consent
  • No outside advertising will be conducted within the V-PPRN
  • You may choose your level of participation and amount and type of information shared
  • All information collected about you as part of the V-PPRN will be kept confidential to the extent permitted by law
  • The V-PPRN Team follows the security guidelines of the U.S. Health Insurance Portability and Accountability Act (HIPAA) of 1996. All collected data is transmitted, stored, and processed in a secure environment.

Your Rights As A Research Network Participant:

  • To know the overall goals of the V-PPRN
  • To be aware of how your data will contribute to vasculitis research conducted by the V-PPRN
  • To be aware of any benefit you may expect from participating in the Network
  • To be given new information that becomes available while you are a Network participant that may affect your decision to participate in the V-PPRN
  • To know how your privacy will be protected
  • To ask questions and express concerns at any time
  • To withdraw from the Network at any time
  • To enroll in the Network without feeling pressured or coerced
  • To decline to take part in the Network

Important Information for Parents/Legal Guardians of Minors and Adult Caregivers

You should only enroll patients in the V-PPRN for whom you have a legal right to enter information, such as a child of yours under 18 years of age or a person for whom you have a legal power of attorney, or if you have received permission from an individual that he/she wishes to be enrolled in the V-PPRN. Before enrolling an individual you should always verify that the individual wishes you to provide information about him/her to the V-PPRN. If you are not sure, please do NOT enroll the individual. You may make family members and friends aware of the V-PPRN by sharing information via social media, sending the individual an email or speaking to him/her about the network.

Contact Us

If you have any questions or concerns regarding the V-PPRN privacy policy or how your information will be protected, please contact us.

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Data Security and Privacy

We take every available precaution to protect your information and keep it safe and secure.

  • The information the V-PPRN plans to gather falls into the following categories:
    1. Personal and health-related information and records you supply directly to the V-PPRN including protected health information.
    2. If you give us permission, your medical records will be requested directly from your health care provider or uploaded by you.
  • While you are in the V-PPRN, you may be notified of research studies for which you may be eligible, but you are not obligated to enter any studies.
  • Participation in the V-PPRN is completely voluntary and at NO cost to you. You may withdraw at any time through the online patient portal.
  • For research purposes we may ask you to update your information every three months and let you know when new surveys are available for you to complete in your V-PPRN patient portal.

Protected health information (sometimes abbreviated as "PHI") is information that can identify you (such as your name, address, telephone number, email address, date of birth, etc.) that relates to your past, present or future health conditions such as your vasculitis diagnosis.

The regulations of the United States Health Insurance Portability and Accountability Act (HIPAA) protect your identifiable health information. If you authorize us to use your information we will protect it as required by the law.

The V-PPRN requests permission to access your medical records from your doctor to help us better understand your disease history and collect key data on vasculitis. All medical records will be stored in our secure database and kept confidential. Your identifiable data will be securely stored and may only be used for research purposes by the V-PPRN. We will not share this information with anyone outside of the V-PPRN team without your permission. The ability to obtain actual medical records electronically is one of the most important ways the V-PPRN is going to help transform research in vasculitis.
  • We collect information about your identity and your health that might help us identify ways to improve care for vasculitis and conduct meaningful research. All information will be used for research purposes only and all responses will be kept private and confidential.
  • You have the ability to withdraw from the study at any time. Once you have withdrawn, you will no longer be a participant in the V-PPRN and we will stop collecting new information about you. We will still use the de-identified information we have collected about you before you have withdrawn consent.
  • Information you provide may be used in research analyses and the results of these analyses may be presented in scientific conferences and published. These presentations and publications will never reveal any information that individually identifies you or any other individual in the V-PPRN.
  • All information collected about you as part of the V-PPRN will be kept confidential to the extent permitted by law.
  • The V-PPRN will not sell, rent, lease or voluntarily share your personal or contact information without your permission.
  • You may be given the option to share the contact information you provide the V-PPRN with patient advocacy and support groups. If you choose to share this information, then you may be contacted directly by the groups you select to share your information with. You have control over what information is shared with patient advocacy and support groups. This authorization will not expire and you may revoke this authorization at any time.
  • The V-PPRN will not share any information that may individually identify you with the researchers and organizations who will review research data. De-identified information may be shared with researchers outside of the V-PPRN including the PCORI network sponsor. This de-identified information will be used for research purposes only and will not be able to be linked back to you.
  • Your identifiable information may only be reviewed by members of the V-PPRN team, and local, state, and federal regulatory bodies that oversee the safety of the network, as required by law.
  • All information and records you provide to the V-PPRN will be stored in our secure database housed at the University of South Florida in Tampa, Florida and kept confidential to the extent permitted by US federal law.
  • Your information will be transmitted and stored using highly secure systems.
  • The V-PPRN Team follows the security guidelines of the United States Health Insurance Portability and Accountability Act of 1996 (HIPAA). All collected data is transmitted, stored, and processed in a secure environment.
  • Yes, you may access your own V-PPRN information. When you register for the V-PPRN you provide us with your email address and create your own password. You may use this to log-in and view your MyV-PPRN patient portal and access some of the health information you provide to us. You should be quite careful not to provide your login information to anyone else, or they could sign in as you and be able to see that same health information. If you are worried that someone else may be using your login information, please contact us immediately. You should also change your password yourself through the V-PPRN patient portal.
  • The V-PPRN team cannot protect the privacy of your data if you voluntarily release information about yourself or your involvement in this Network. The V-PPRN team pledges to protect the privacy of the data you provide through the patient portal.

Additional Information on Data Security Measures

The following is a technical explanation of the measures the V-PPRN takes to ensure the protection of your data.

The V-PPRN Data Management and Coordinating Center at the University of South Florida (USF) will host the website and database servers for the V-PPRN. All information will be stored in linked data tables on the USF Coordinating Center's secure network servers. All information that may identify you (including name, email address, etc.) will be stored in separate (but linked) data tables so that vasculitis and health related data may be viewed by study staff as needed without inadvertent association with identifiers when such linkage is not required. The V-PPRN Team follows the security guidelines of the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA). All collected data is transmitted, stored, and processed in a secure information technology environment.

The USF Data Management and Coordinating Center has extensive experience in data management for multi-center clinical studies and takes the following data security measures:

All data will be transmitted and stored at the USF Data Management & Coordinating Center; the DMCC currently utilizes 128-bit secure socket layer (SSL) encryption which protects all data transmission sent over the internet between the Coordinating Center's web server and every client machine (including our research participants' machines) that accesses our study web sites.
All study data is housed in a secure server room. The server room is in a building that is locked outside of normal business hours, and in a limited access locked suite fitted with a proximity access control system. Within the locked suite is a locked server room fitted with an additional secure door. Only critical Information Systems staff have the proximity access code required to enter this room.
All servers are protected from viruses by antivirus software. This software automatically checks for virus signature file updates once an hour, and if necessary, directly updates itself. All antivirus software is monitored and network personnel notified in the event that the software stops functioning on a server.
The network, including all the servers that will store V-PPRN research data, is behind a dually redundant secure firewall that does not allow unauthorized access to any research data server.
The study database is backed up nightly to another secure file server and eventually to "tape", which is stored off-site and allows for system and data recovery even in the event that the server room is destroyed. The Data Management and Coordinating Center's disaster recovery system also follows standard operating procedures to maintain full security of backup data.
If you participate in this Network, you will be assigned a unique V-PPRN number. It will identify the information collected from you including any health records from your doctor. Your identifiable data will be securely stored and may only be used for research purposes by the V-PPRN. We will not share this information with anyone outside of the V-PPRN team without your permission. De-identified information may be shared with researchers outside of the V-PPRN including other PCORnet research networks. This de-identified information will be used for research purposes only and will not be able to be linked back to you.

Third Party Technologies

The V-PPRN may use third party technologies for our website, patient portal and/or our communications with you.  We will ensure that we never share sensitive information about you or your health information with these parties or anyone outside the V-PPRN.  Any third party technologies that we utilize will not be alllowed to use or share your email address or any other information for any purposes or contact you.

Cookies 

The V-PPRN uses a first party cookie to track vistor activity on our websites.  We use this information to improve the content of our site as well as to provide patients in our Network a more relevant overall experience with our organization and our site.  As mentinoed earlier, we never share information you provide us with third parties.  If you do not want this site to place a cookie on your browser and track your activity, you may leave the site or you may browse the site using privacy mode in your web browser.  To learn how to use privacy mode, refer to the links below depending on the browser you use.

What if I have questions?

If you have any questions, concerns or complaints about this research, or experience an unanticipated problem, please contact:

Ms. Kalen Young, V-PPRN Network Manager

If you have questions about your rights as a participant in this research, general questions, or have complaints, concerns or issues you want to discuss with someone outside the research, please contact:

University of South Florida Institutional Review Board

University of South Florida College of Medicine
12901 Bruce B. Downs Blvd., MDC35
Tampa, FL 33612-4799
United States
Telephone: +01 (813) 974-5638

 

If you have any questions or concerns regarding the V-PPRN privacy policy or how your information will be protected, please contact us or call us at 1-888-772-8315.

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