Upload Your Medical Records
PRAI has a goal of analyzing the full medical records from birth until today for 1,000 anonymous PANS patients and their siblings and publishing a full report of the findings in a peer-reviewed journal.
We believe information obtained from those early years, coupled with a public health survey looking at environmental and genetic history may shed light on the series of events that led a child to a PANS diagnosis.
Learn how to get your medical record from your child's physician so you're ready to upload it to the registry as soon as it launches.
It often takes 30 days to access your child's full health history and like you, we're tired of waiting for answers for our kids. So we want to help you get started today so we can hit the ground running.
A federal law called the Health Insurance Portability and Accountability Act (HIPAA) gives you the right to see and get a copy of your child's health record.
Fortunately, the Office of the National Coordinator (ONC) in the U.S. Department of Health and Human Services (HHS) created a fantastic guide, called The Guide to Getting & Using Your Health Records for patients, parents, and caregivers who want to get their health records.
This guide will show you how to make sure your records are accurate and complete so that we may utilize the information to identify trends from birth to present time that may help researchers advance their understanding of the cause and mechanism behind PANS.
Once you've familiarized yourself with the process, use the guide below to get those records into a pdf format so that you're ready once you've completed our public health survey.
Once you've obtained a full copy of your child's medical record, black out any information on your child's record where someone might be able to identify who they are. You can do this easily by simply taking a black magic marker and blacking out the following information.
- Patient Name
- Insurance Information
- Date of Birth
- Authorization Number (if present)
Make sure to go through each page of the medical report. We know this is no small task. But rest assured, if somehow any identifier is missed, one of only 3 NIH trained registry staff will black that information for you if it was missed. Your child's medical records will be completely de-identified prior to being used for any research purposes.
To cut down on costs, we ask that you please look through your child's report to make sure that the records are in chronilogical order. This will ensure that we utilize our donors funds to the best of our ability. We don't want to have to pay someone to put the records in order. We know this process isn't easy, but we are confident the results will pay off and we are so grateful for your willingness to help us find answers for our children.
We're super excited about an amazing FREE app (Genius Scan) that allows you to scan of your child's medical record from your phone and save them to a pdf for FREE! Just follow the tutorial below to learn how to save the file as a pdf.
Thank you for taking the time to obtain and scan your child's full medical record for the registry.
There are truly no words to describe the gratitude we have to the PANS community for doing the hard work to get answers for our kids. We are confident that patient-centered research is how we will usher in answers. No one knows your child like you do. With the help of families, clinicians and researchers we are confident we can one day fully restore these children to health.
Thank you for being a valuable part of that story.
Will I be reimbursed for the cost of my child's full chart?
We know that obtaining these records can be costly. Because of that, each participant that uploads their child’s full medical records will be offered compensation with a $35 gift card (per child registered) to assist with the associated copying costs and to recognize the extra time and effort it will take for parents to provide these records to the PRAI project team. Participants may choose "no compensation" and donate their card back to PRAI if they'd like to help finance future research projects. Otherwise, a gift card will be emailed to you upon completion of the survey and medical records upload.