International PANS Registry
For our children and adults with PANS
The International PANS Registry (IPR) is a patient-centered database of information on Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) that will streamline researchers’ abilities to investigate potential treatments for PANS and hasten development of prevention and intervention strategies and further elucidate the causes of PANS.
Robust community participation will lead to better diagnostic tools, policy changes, and identification of effective treatment strategies. Your experience matters and your child matters. To change the future for all of our children, we need your help!
Frequently asked questions
What is the International PANS Registry (IPR)?
International PANS Registry (IPR) is a simple patient-centric data repository driven by a vision to serve as a bridge connecting researchers to patient data. The purpose is to accelerate research, overcome barriers to healing, and make life-enhancing treatments accessible to all children and adults with PANS. Please note, as PANDAS is a subset of PANS, it is included in the overarching umbrella every time we refer to PANS in our communications.
Please note: Due to the complexities of some of the survey’s it’s VERY important you save your data often. To protect your privacy, the software will log you out if idle too long.
SAFE & SECURE
Under a structured Institutional Review Board (IRB) approved protocol from IntegReview on Dacima, a trusted world-wide software used for hundreds of clinical trials and other research studies, the International PANS Registry (IPR) will capture comprehensive information on disease characteristics, environment, treatments, lab markers, maternal health, and lifestyle. Consent from participants to contribute their information and their data will be closely monitored for safety and quality under clear systematic procedures. Only qualified project investigators on the IRB will access raw data and each hold Protecting Human Research Participants certification through the National Institute of Health (NIH).
IPR was created with children and families as our sole priority. We are honored to facilitate a transfer of power back into the hands of patients and families. Like you, we have felt powerless at times. The IPR changes that. Patients and their families have participated in survey design, focus groups, and an extensive pilot to make this Registry possible. They have been determined to have the voices of their children heard and the IPR will accomplish that goal.
While we understand strict criteria is necessary to conduct stellar research, IPR is committed to no child being left behind. Far too many children don’t meet the strict research criteria of PANS and PANDAS, and there remains a lack of awareness among the medical community. IPR encourages broad patient participation by allowing those who don’t meet strict PANS criteria, yet suspect their symptoms are immune mediated, to be deemed eligible for enrollment. We believe our children don’t have time to wait for the diagnostic criteria to appropriately broaden.
IPR is committed to collaboration. The project is a great example of how people coming from different backgrounds, all with differing perspectives, can work together beautifully towards a common goal. Together, with members of the scientific community, clinicians, non-profit partners and most importantly, patients and their families, we believe our patient-reported outcomes will be of great value to the cause.
How does it work?
- When first entering the IPR database, you’ll be asked a series of questions to determine the eligibilty for you or your child.
- If your or your children are eligible to participate as a CASE or CONTROL, you’ll be asked a series of questions. We will collect quantitative and qualitative health history data and lab values for study. ***Important Information! All children, both cases and controls, must be entered at the time of eligibility, otherwise, they will not be able to participate in IPR. If you ONLY have children with PANS, you may enroll them all as a CASE. If you have other unaffected children, please enroll them as well as a CONTROL. Please enroll all children (both those with and those without PANS) at the start of the survey.***
- When IPR has the minimum desired data set (1,000 PANS cases and 1,000 control siblings), investigators will start summarizing data and mine for any leads that may be worth investigating. The Registry Committee will reach out to researchers and labs that have expertise in the areas of interest and encourage them to fill out a Data Request Form to officially query the de-identified data and analyze it themselves.
- Abstracts and manuscripts will be written by key investigators summarizing full survey responses stratified by case/control status and findings will be submitted to academic journals for peer review.
- We will obtain prospective data for those who opt in through the use of IPR’s flare diary.
- Ultimately, the database generated by the Registry will be utilized by researchers to better understand the causes of PANS to develop prevention and intervention strategies. We will connect interested families with scientists to participate in treatment and clinical trials.
100% of every dollar donated goes to PANS Research.
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Our Top Priorities
In addition to the field of epidemiology, we will market de-identified registry data to research labs in the following core areas as a top priority: