Patient Participation

What is the USIDNET Registry?

It is a national patient consented registry designed to obtain longitudinal data on a large number of individuals with known or suspected primary immunodeficiency diseases (PI). By putting information about individuals with PI from many places into a single Registry, we hope to gain knowledge about the rate of occurrence, causes, natural history, and outcomes of PI. Our goals are to advance research in the field of PI and improve the quality of life of patients.

Why Should I Join?

Living with a primary immunodeficiency disease (PI) makes your life experiences unique. When your experiences and those of others with PI are examined collectively, common findings can help advance vital research and help improve the quality of life for the entire PI community.

Your participation adds value to an important resource used by the medical community to examine the diagnosis and treatment of PI. Through participation, you will enable researchers to understand the experiences of individuals with different kinds of PI.

Who Can Join the Registry?

If you or your child have a known or suspected primary immunodeficiency and are living in the United States, you are eligible to join the USIDNET registry.

How Can I Join?

At IRB-approved enrolling sites, you can consent to join directly through your medical provider. CLICK HERE to see all active enrolling sites.

You can also join online through the Immune Deficiency Foundation's patient-powered research network, PI CONNECT!

PI CONNECT combines the information you enter into your IDF ePHR, with your clinical data provided from your physician and entered into the USIDNET registry. When you join PI CONNECT, you agree to share your de-identified (which means it cannot be traced back to you) health information with USIDNET. This allows physicians and researchers to gain a better understanding of PI diseases, their outcomes and treatments.

The first step is to create an ePHR account. IDF ePHR is the electronic personal health record designed specifically for the PI community. It is a free, secure platform where you can store and track your own health information. When you sign up for an ePHR, you’ll be asked to enter some basic information. If you have a PI diagnosis, you will be asked to consent into PI CONNECT. Once you consent, you are automatically entered into the USIDNET registry!*

You can find detailed information about PI CONNECT, the consent process, our privacy policies and how to get started at www.idfpiconnect.org

Visit the PI CONNECT Website

*After you consent, you will receive a welcome email inviting you to join the PI CONNECT forum, where you can participate in research conversations, along with a request to complete an electronic Authorization for Release of Medical Records. This form indicates to your physician that you have given us permission to obtain your clinical data to be entered into the registry.