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
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.
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.
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.
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:
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.
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).