Chiari malformation (CM), syringomyelia (SM) and related disorders (RD) affect millions of people worldwide. Starting on the path to improved care is daunting, to say the least.
An important early step is to establish the Bobby Jones CSF International Patient Registry, which will be a collection of patient-reported data that can serve as an important tool for improving the lives of people with CM/SM/RD. Importantly, physician-reported data will be added to supplement all patient information. Registries like this are essential for tracking the identification and diagnosis of people with these disorders and monitoring their health. They also help experts set priorities for health care.
Check back soon for materials that help you with this registry process:
- PDF fact sheet to walks you through the process
- PDF translations into several languages (for non-English speakers or ESL participants)
- …& anything else that may be requested along the way!
The goal of Module 1 of this international registry to find out who has CM and SM; which co-morbid conditions are most important; what impacts the daily lives of patients the most; what is the overall quality-of-life and quality-of-care?
But, having an international patient registry, at all, means being able to one day answer the most fundamental questions about these disorders. Questions that, quite frankly, are not well understood even by the experts right now. These include:How do people get Chiari?
Information like this is absolutely essential for lobbying government and advocating for improved care within the healthcare sector.
You control your privacy. Privacy settings are entirely up to you and you can change them at any time. You decide what researchers see, what they can ask permission to see, and whether or not you can be contacted at all. If at any time you change your mind, you can edit those settings. You own your data– no one else does!
You become a researcher. Normally, joining a registry means you will be a part of that single institution’s study, only. This registry is different because researchers are able to ask you to participate in their study, no matter how far away! That means you have the choice to be contacted for future studies– even from outside Bobby Jones CSF! We do not own your data– you do. So you have the choice to join or deny any study that becomes available… in a way, you become your own researcher!
The patient and caregiver voice is most important. At the end of the day, patients and families are the most important part of this project. At it’s core, the International Registry is patient- and caregiver-driven. What you say matters. What you think matters. Your input is invaluable to the current research being done. Bobby Jones CSF and all researchers working on these disorders want to know what you think and how you feel.
Get started today and take all the surveys you can. Have a referral code? Don’t forget to enter it in the bottom right-hand corner of the webpage.
Any problems/questions please contact: Kaitlyn by phone (718-966-2593) or email (firstname.lastname@example.org).
Reviewed on 9/2019