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Be a Part of Research!

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An added benefit for users of IDF ePHR is the opportunity to be a part of research by consenting into PI CONNECT, the new IDF Patient-Powered Research Network.

PI CONNECT joins the information you enter in your IDF ePHR, the online personal health record for patients with primary immunodeficiency (PI) with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI. Bringing together this information through PI CONNECT gives researchers valuable insight into the patient experience. Rest assured, your information is safe, secure and de-identified.

IDF was approved for a funding award for PI CONNECT from the Patient-Centered Outcomes Research Institute (PCORI). PI CONNECT is a part of PCORnet: the National Patient-Centered National Clinical Research Network. PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies, giving patients “a seat at the research table.”

PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research.

PI CONNECT along with all networks in PCORnet will form a new national resource with the goal to boost the efficiency of health research.

 

Share Your Research Ideas

Two women

You can feel great about contributing your information to research to help improve care of patients with PI, but have you ever had an interesting idea for researchers to investigate?

PI CONNECT gives you access to an exclusive research forum where you will be able to:

  • See research questions as they are posed and offer your opinions about them.
  • Propose your own research questions that matter to you.
  • Track your own data and see how you compare to others with the same disease.
  • Have your ideas heard and translate them into actions!

You can help guide research, and the information you share provides real-time information, giving researchers a better idea of the patient experience.

 

FAQ's

What is PI CONNECT?
PI CONNECT is a tool designed to directly connect patients to research being conducted in the field of primary immunodeficiency (PI) diseases.

By joining PI CONNECT, you agree that the information you enter in your IDF e Personal HealthRecord (ePHR) will be shared with the United States Immunodeficiency Network (USIDNET). USIDNET is an established registry containing medical data on over 3600 patients with PI. Combining your information with USIDNET will help provide the most complete picture of your health. Physicians and researchers use what’s known as “de-identified” data, which means it cannot be traced back to you, from the registry to gain a better understanding of PI diseases, their outcomes, and treatments.

By joining PI CONNECT, you allow us to:
  • Store the data from your ePHR in the USIDNET Registry.
  • Combine the information you enter with medical information provided by your physician.
  • Share your de-identified data with researchers in PI and other related fields to advance the knowledge and treatment of PI.
What do we promise you?
We promise to safeguard your privacy. While agreeing to participate in PI CONNECT does not involve any physical risk, we know that the risk of loss of privacy is a concern for our patients. It is for us as well, so we take the following steps to ensure your data remains safe and private.

  • Only administrators will have access to identifying information such as your name and address.
  • We will only share de-identified data with researchers.
  • We will never give your contact information to an outside entity without your consent.
  • We will notify you immediately if there is ever a breach in your privacy.
  • You will always have the opportunity to remove yourself from PI CONNECT and revoke your consent at any time.
Are there any benefits for me?
Of course contributing to research ensures better care in the future, and you can feel really great about that, but PI CONNECT provides even more value by connecting you directly to the research. You will be given access to an exclusive PI CONNECT research forum where you will be able to:

  • See research questions as they’re posed and offer your opinions about them.
  • Propose your own research questions that matter to you.
  • Track your own data and see how you compare to others with the same disease.
  • Have your ideas heard and translate them into actions!
What do I do?
You have already taken the first step by creating an IDF e Personal HealthRecord account. After indicating that you want to participate in PI CONNECT, you just continue to manage your health information in your ePHR, and we’ll take it from there. We will combine the information from your ePHR account with information obtained from your physician and add it all to the USIDNET Registry.

You may hear from us occasionally:
  • We will periodically send a reminder to ask you to update your ePHR.
  • We will alert you to specific research opportunities that become available.

If you have any questions about your involvement in PI CONNECT please contact Dr. Ramsay L. Fuleihan of the Immune Deficiency Foundation at 866-939-7568 or 443-632-2556.
What are my rights?
Participation in PI CONNECT, as with any research, is completely voluntary. You have the right to stop participating at any time. Know that you can choose not to participate now or even in the future, and it will not affect your medical treatment or access to care in any way.

Should you have questions about your rights as a research participant, or if you have concerns regarding this research study for which you would rather speak to someone other than our staff, you can contact Schulman Associates Institutional Review Board, Inc. toll free at 1-888-557-2472 during business hours Monday – Friday 8:00 a.m. to 6:00 p.m. EST.

Create Your IDF ePHR Account and Join PI CONNECT in 4 Easy Steps!

  1. Create Your IDF ePHR Account

    Go to www.idfephr.org and click “New User” and create an account. You’ll be asked to enter your basic information. IDF ePHR is an easy way to safely and securely store your information in one place.

  2. Begin Your First Record

    You can create records for your whole family, but the first record you begin with should be for the person with PI. All other records that follow do not require a PI diagnosis. Be sure to enter all required information, and accept the terms and conditions. Those who have a PI will be asked to consent into PI CONNECT.

  3. Join PI CONNECT

    Join PI CONNECT, the IDF Patient-Powered Research Network, and be a part of research! You will be asked to join, or consent into, PI CONNECT, which allows patient-entered data from your IDF ePHR to enter into the United States Immunodeficiency Network (USIDNET) patient consented registry. Once you join, you can participate in research conversations on the PI CONNECT forum.

  4. Start Using the IDF ePHR

    Your IDF ePHR is your personal health record. Record your medications, track your infusions, set goals, reminders and notifications—make it work for you. Customize your ePHR and sync with Microsoft HealthVault to access information from various labs, pharmacy systems, personal health devices and health resources. Make time with your clinician more beneficial by sharing organized, comprehensive information from your ePHR. Most importantly, use IDF ePHR to help you live a healthy life!

For more information, e-mail piconnect@primaryimmune.org or call 800-296-4433.