Registry

Register a Patient

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The PFIC Self Report Registry is your chance to take the power back from this rare disease. By participating in the self-report registry, you help speed up PFIC research, make research more meaningful, and allow research from around the world. Everyone’s participation is important. Read more about patient-led registry below and how it puts the power back in your hands, then sign up as a patient or patient guardian. By taking 30 minutes to join the PFIC Network patient self-report registry for you or your child, you will help to document the needs of the PFIC patient community.


Register via Email or Mail

Below is the information that you will fill out to join the registry. You can choose to download these three documents and submit via mail (address on form) or email to cords@sanfordhealth.org.

All three documents must be completed if you choose to submit via mail or email. 1. Informed Consent 2. PFIC Questionnaire 3. CoRDS Questionnaire

What is the Registry?

The PFIC Network Patient Registry is a secure date collection where patients or their caretakers provide information about their experience with the disease. The information you provide is essential for furthering research efforts for better care of PFIC patients and families. All those diagnosed with PFIC are encouraged to participate. Parents can join the registry to enroll their child. A spouse can participate on behalf of their partner.

The individual’s data collected includes information about diagnosis, family history, quality of life, medications, surgeries, other diseases, and patient demographics. It takes about 30 minutes to complete the patient survey. The registry coordinator is happy to help you complete your survey.

If you or your child appears to be a match for a study or a clinical trial, the registry coordinator will contact you. It would be your choice to connect with the researcher(s) to let them know if you are interested.

The PFIC Network Patient Registry was initiated in response to the difficulty of locating PFIC patients and PFIC data to conduct research on our rare disease. Our aim with the Registry has been to add the patient’s voice to every facet of PFIC research and to facilitate and speed up PFIC research towards a cure.

The purpose of the registry is to track PFIC disease status and symptoms, assist in clinical trial recruitment, facilitate drug safety monitoring for new drugs, and allow patient participation at each level of research. This puts the power back in your hands.

The registry can also assist with our goal to improve the lives of patients and families worldwide. The PFIC Network can work with registry information to identify knowledge and resource gaps so that we can work on creating solutions for the global patient community.

The registry is vital in our search for a cure, because PFIC is rare and poorly understood. This makes it difficult to gather information about patients and develop treatments for PFIC. As more PFIC patients participate in the registry, researchers can conduct larger clinical trials for PFIC disease and symptom treatments, and eventually discover a cure.

Patient Driven: The registry is patient-driven. This means that the patient is at the helm. PFIC Network believes that no one is as passionate as patients and their families in wanting new treatments and a cure. Additionally, no one describes symptoms and quality of life better than patients.

The Patient Voice:

The PFIC Network Patient Registry participants represent an important voice of the PFIC community by:

  • Engaging in research through patient surveys
  • Joining clinical trials
  • Advocating by expressing their unmet needs
  • Tracking effectiveness of new trial drugs
  • Speeding up new drug approval

 

Researchers, approved by the PFIC Network Patient Registry Team in collaboration with CoRDS, request anonymous registry data for their research, for patient recruitment in clinical trials, and for developing clinical study protocols. Add that they have full control over their data and can pick and choose where the data is used.

PFIC Network established the registry in collaboration with the Coordination of Rare Diseases at Sanford (CoRDS). The registry is housed on a platform that abides by National Institutes of Health standards for privacy and confidentiality and is reviewed annually by an Institutional Review Board (IRB). No identifying information ever leaves the registry.

Join the Patient Registry

How You Will Help

See how your participation today helps the entire PFIC community

Join the patient registry

Build our Registry numbers! Help us show the need, so that we can create solutions together!

Registry Recruitment Goal

We had 121 participants in 2021, with a 47% completion rate. Our new goal is to have 200 active participants by 2024!

Data presented to FDA

Data analysis report was taken to the FDA during the PFIC Network’s listening session to show the much-needed need for further treatment development

Data Discussed with Researchers

The PFIC Network will create research opportunities based on discussions with the medical and research community during our mid-year retreats

Research Grant

The PFIC Network creates opportunities for patient centered research based on self-reported data and feedback from patient and caregiver community.

Register Online Today

We need your participation in this patient-generated and patient-driven registry. Your voice is crucial to take back power from PFIC for this small and dispersed community! You can help researchers worldwide by taking less than an hour of your time to complete your, your child’s, or your spouse’s profile. Join the hundreds of men, women, and children who are helping to advance PFIC research towards treatments and a cure!