IDF PI CONNECT is the Immune Deficiency Foundation’s Patient-Powered Research Network developed for persons with primary immunodeficiency (PI). It connects information entered into IDF ePHR, the electronic personal health record for persons with PI, with the United States Immunodeficiency Network (USIDNET) patient-consented registry, which contains clinical data on several thousand patients with PI.
When you join PI CONNECT, your identity remains confidential, but your health information will become available to researchers who can examine the collective experiences of persons with PI. Bringing together this information through PI CONNECT gives researchers valuable insight into the patient experience.
Follow these steps to get started:
1. Create Your IDF ePHR Account
Go to www.IDFePHR.org and click “Create Account.” You’ll be asked to enter your basic information. Account holders must be 18 years or older.
2. Begin with your First Record
You can create records for your whole family, but the first record you create should be for the person with PI. All other records that follow do not require a PI diagnosis. Enter all required information, and accept the terms and conditions.
3. Join PI CONNECT and Become Part of the USIDNET Registry
Those who have a PI will be asked if they’d like to consent into PI CONNECT, the IDF Patient-Powered Research Network. This consent allows patient-entered data from your IDF ePHR to link with the United States Immunodeficiency Network (USIDNET) clinical registry. Read the consent language and choose the option you prefer. If you have a child under the age of 18 years with a PI diagnosis, you may consent on your child’s behalf. If you choose not to consent upon registration, you have the option to change your consent status at any time under your IDF ePHR account profile. Once you consent, you are automatically entered into the USIDNET Registry!
If you would like to view the consent details, please click here. (Note: this is not where you sign up for PI CONNECT. You will need to do this in your IDF ePHR.)
4. Account Validation and Welcome Email
IDF will need to verify your account upon joining PI CONNECT. This is a manual process, so it may take 24-48 hours but once we have verified the account, you will then receive an e-mail from IDF staff.
5. Completing Your Authorization Form
Included in your welcome email will be 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. You can also request a paper authorization form be mailed to you if you prefer. Once we acquire records from your physician, clinical data is abstracted and entered into the registry. All of this information is de-identified and stored in our secure database. This is an important and final step in the process of connecting your personal experience with PI to your clinical records.