INTERNATIONAL PATIENT REGISTRY FOR CHIARI & SYRINGOMYELIA

 

Image of a family walking through a park, wearing Chiari awareness gear for a unite@night walk. Bobby Jones CSF logo in the lower left corner. Text reads: Current Registry Studies.

ENROLLMENT TEMPORARILY PAUSED

By now, you know that we had to temporarily shut down the patient registry from new enrollment and data collection because our platform company closed. We are in the process of analyzing the data we already have right now

While we finish that analysis, we’re making plans for our registry’s next steps! BJCSF’s registry will always remain patient-centered and truly patient-driven. In order to do that, the organization’s plans must be developed based on the issues that patients and caregivers care about the most.
We’ve been asking patient registry participants what are some of the more specific areas needing more research in the future… Please fill out this form and let us know if you have specific interests for future research efforts!
Below is some of the great topics that have already been recommended:
  • Comorbid physical conditions (e.g., cranio-cervical instability, MCAS/immune issues, others)
  • Comorbid non-physical conditions (e.g., neurodivergence, well-being, etc.)
  • Diagnostic journeys (i.e., understanding pathway from initial symptoms > imaging > clinical diagnosis)
  • Long-term care options (especially nonsurgical options like physical therapy, CBT, medicine, etc.)
  • Aging with these disorders (Do symptoms/treatment options change? Issues becoming an “adult” after being a “pediatric patient”? Etc.?)
  • Returning symptoms (soon after, or maybe very long after initial surgery/treatment)
  • Access to care (How easy or hard is it to get the right care, insurance coverage, referrals to the right doctors, etc.?)

REGISTRY STUDIES IN ANALYSIS

Long-Term Study & Patient Voice Project. This is our ongoing, long-term study of patients and families affected by Chiari malformation, syringomyelia and related disorders. As part of it, we used a new methodology to determine if we can better include the patient and caregiver voice in the development of new treatments and devices for these disorders! We plan to return these results immediately to everyone involved in the study. No more waiting years and years to see the results of a study (if you ever see them at all).

You can learn more here about parts of this project. One goal is to develop a tool for companies seeking FDA approval for new treatments and devices that will be accepted by the FDA.

Understanding the Cranio-cervical Junction. The cranio-cervical junction is implicated in Chiari and related disorders such as cranio-cervical instability (CCI), which are relatively poorly understood. In order to facilitate better studies and future answers, this study seeks to better understand and identify the symptoms and concerns that patients with these disorders are experiencing right now.The first survey for this study is meant to understand the burden of chronic head and neck pain in individuals living with cranio-cervical junction abnormalities (with or without CCI or EDS/hypermobility).

Use of Telehealth in Chiari & Syringomyelia. Individuals living with Chiari, syringomyelia and related chronic illnesses must have relatively regular meetings with their clinical teams, which can become burdensome financially and physically. Telehealth may offer a solution.

Three children sit, smiling at the camera. The girl with braids (on far left) wears a shirt that says "Chiari messed with the wrong..." and the words are cut off. Text reads: Your input matters: International Patient Registry.The Bobby Jones CSF logo is in the bottom right corner.

HELP US PRIORITIZE FUTURE STUDIES

We are in the process of a strategic plan for this registry and we want you to be a part of it.

We’ve been asking patient registry participants what are some of the more specific areas needing more research in the future… Please fill out this form and let us know if you have specific interests for future research efforts! You can also email Kaitlyn at kesposito@bobbyjonescsf.org to give us your thoughts.

 

 

 

 

 

 

 

 

 

Sign up. Stand up. Be heard. BE THE KEY TO A CURE.

At the end of the day, good research into Chiari, syringomyelia and related disorders relies on you. You are the key we need to unlock the answers for the millions of families who struggle with Chiari malformation, syringomyelia and related disorders.

A girl with purple hair for Chiari awareness smiles at the camera. Text reads: Be the key to a cure: International Patient Registry.The Bobby Jones CSF logo is in the bottom right corner.

ABOUT THE REGISTRY

WHY DO WE NEED A REGISTRY?

Chiari malformation, syringomyelia and related disorders affect millions of people worldwide. Starting on the path to improved care can feel overwhelming. Having an international patient registry will allow us to answer fundamental questions about the disorders that even the experts can’t really answer right now:

  • How do people get Chiari?
  • How does a syrinx develop?
  • What other disorders are complicating the symptoms and treatment methods for those patients?
  • What is the best treatment for these disorders?
  • Is treatment even necessary?
  • It was once believed that under 20,000 people had these conditions… that number is now estimated over one million… so how many people are actually affected?

This registry will help us measure the effectiveness of health care programs and treatments. We’ll be able to see if  current treatments are working for patients– and if they are not, we can then advocate that those treatments to be improved. This might lead to less repeat surgeries, fewer hospitalizations and the development of new diagnostic and treatment options that can keep medical bills from skyrocketing. Improvements in treatment will not only keep costs down, but more and more patients will have better quality-of-life.

Your participation in this registry is key to finding a cure.

A group of volunteers carry signs from a unite@night awareness walk. Text reads: More about the registry: International Patient Registry.The Bobby Jones CSF logo is in the bottom right corner.

GOT A QUESTION?

If you ever have a question about this registry or the studies that come out of it, you can always contact us to learn more. We always have at least one dedicated staff person able to answer your questions. You can contact Kaitlyn, specifically, by phone (718-966-2593) or email (kesposito@bobbyjonescsf.org).

 

Revised: 2/2024