As an adult with a neuroimmune condition that most doctors don’t know how to diagnose, let alone treat, all too often, I’ve felt like there was nothing I could do to change their minds. I would bring papers and mention the many fine hospitals that are researching PANS only to be dismissed and gaslighted. Why? Partly due to arrogance or wanting to maintain the status quo. But these behaviors have their root in the “P” being for pediatric, the fact none of the research studies mention adults, and the lack of enough large-scale studies in general.
Have you ever felt alone and frustrated by how little help is available while you watch your life waste away?
Now what if I told you that you could do something tangible that could change the situation? What if I told you there was a way for you to help bring PANS out of the grey area of medicine into which many providers place it?
Enter the International PANS Registry. According to the website:
“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…”
To be very clear, adults with PANS/PANDAS are not only included in this effort, but especially needed.
In order for this registry to have the impact our community needs, we want to get at least 1000 patients and 1000 controls by August 28th.
The study will not close if we don’t have enough people by then, but the sooner we have the data, the sooner the studies can commence, and the sooner the change that we need can come.
If you have ever had a diagnosis of PANS or suspected that you have or have had PANS, you are needed. If you no longer have PANS because you’re in remission, we (as in the whole community) want to hear what you did to get better. And if you were misdiagnosed with PANS and turned out to have something else, we want to know that, too.
How do you participate?
All you have to do is enroll online and put in your data. People who have PANS (or their parents if under 18) will put in their data. If you have a sibling, it is important that they participate as well, and that you add them at the beginning of the survey. They will then get a link to fill out the survey themselves. Your sibling will be a control if they don’t have PANS. If your sibling also has PANS, or has any symptoms that might suggest PANS, then they should enroll as a case.
If you don’t have an official diagnosis of PANS or PANDAS from a doctor but believe you have or have had it, you can still participate. Many people have not been able to find someone to diagnose them, but we still want to know your experiences.
Also important to note, if there are any questions where you don’t remember what happened or are unsure, please leave them blank. It’s better to omit something you’re not certain of than to input something that is not true.
How does it work? And why is this so important?
After we get enough data, researchers will be able to apply to have access to the registry. All data is completely anonymized and secure. No one will be able to look at individual patients in any way that could identify them. For more information about the registry and survey process, please visit the registry’s FAQ page.
The registry will allow researchers to find patterns and trends in patients with PANS in ways never before possible. The hope is that we can identify triggers and risk factors that can lead to prevention. The registry will also help us learn which treatments are most helpful and for what kind of patient.
The registry will pave the way for more studies.
A patient registry is ultimately a jumping off point for more studies. We will need double-blind, placebo-controlled studies in order to prove which treatments are effective. However, without a registry, it is more difficult for researchers to know how to design the most relevant, needed studies. By having a registry to identify interesting trends, researchers may have better ideas about how to design studies with maximum impact.
Why do we need adults specifically?
For too long, PANS has been known as a disorder that only affects kids. Doctors often parrot that there is “questionable evidence” of PANS affecting adults, by which they mean that no one has bothered to systematically and scientifically study adults who meet diagnostic criteria.
But if we get enough adults to participate in this registry, my hope is that researchers will realize the need to study people who are no longer pediatric. And once we have studies on PANS in adults, we can end the controversy of our existence.
I believe that the more concrete evidence we have that PANS doesn’t magically disappear when a kid gets older, the more incentive the medical community and insurance industry will have to provide proper treatments for all age groups.
I want to see a tidal wave of adults and teenagers with PANS in this registry. I want a flood of responses that will make it impossible to ignore our existence and the fate of many kids who do not get adequate care.
If we want to have a better sense of what treatments help which kinds of patients the most, then a massive database of patients’ experiences is the way to go.
Will you join me in shaping the future of PANS research?
If you have ever felt like you didn’t have a voice or your suffering didn’t matter, participating in the registry is the way to change that. Now is your opportunity to share your story in a secure, anonymous format that will truly have an impact. Now is your time to tell scientists what you want them to know. Now is your time to participate in something bigger than yourself that can help prevent others from going through the hardships that you did.
It will take an hour or two to complete this whole survey, but it will be so worth it. It can save you hours and hours of explaining to future doctors and prevent others from going undiagnosed for years as is the norm right now. It can help make sure that intensive mental health resources go to people who need them rather than those with treatable medical conditions. It can help direct research studies that eventually lead to cures. So grab any medical records you have on hand, sit down, and help the change the world right now: