**If you are having issues accessing the registry, please contact Kaitlyn by email (kesposito@bobbyjonescsf.org) or phone (718-966-2593).
*NEW* Long-Term Study & Patient Voice Project. We have officially re-launched our ongoing, long-term study of patients and families affected by Chiari malformation, syringomyelia and related disorders. As part of it, we are using 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 will be sending back most of 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). Learn more about this project here.
Our goal is to develop a tool for companies seeking FDA approval for new treatments and devices that will be accepted by the FDA.
The second round of surveys for the patient voice project will close soon, so be sure to get started now!
*NEW* 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).
*IN ANALYSIS* 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 want to keep you involved in our planning of research for 2022, so we’re starting the year off with a few questions for you: What do you think is important for us to look at over the next year? Has the COVID pandemic impacted your ability to access care? Have you needed additional accommodations at school or at work?
Tell us what YOU think is most important to be researching over the coming year! Email Kaitlyn at kesposito@bobbyjonescsf.org to give us your thoughts. At the end of the year, we will re-evaluate how to keep making patients, parents and caregivers more and more involved in our ongoing research efforts. But, we can only do this with your support.
WHAT MAKES THIS REGISTRY DIFFERENT?
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.
The Bobby Jones CSF International Patient Registry uses state-of-the-art technology, including privacy and security features that comply with (and exceed) all of the national and international requirements (e.g., HIPAA, GDPR, CCPA). The registry’s technology partner is LunaDNA. You will see their logo on the screens you use to enter your information and connect your medical records, patient portals and genetic data. If you have questions about how to set up your account in the new registry, you can consult the LunaDNA Help Center, or you can contact Kaitlyn Esposito: kesposito@bobbyjonescsf.org.
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.
You always maintain a “string” on your data. Researchers cannot take your data out of the system, and you can always decide to stop sharing it. Any personal data that could be used to identify you is also stored separately from the personal health data you share. This means that your shared data is always de-identified when researchers see it. Your de-identified, shared data is combined with shared data from other participants in LunaDNA. Researchers only ever have access to this combined dataset and cannot see your shared data at an individual level.
The system also makes a note each time someone accesses your de-identified data. This ensures accountability and traceability for any person who accesses your data in any way. All of these features and the oversight provided by the SEC (LunaDNA SEC filing), help to create a secure environment for your data. Security and privacy are of the utmost importance to us, and Luna is at the forefront of these fields!
Even more detail is available on how your data will be protected in the new registry: review LunaDNA’s updated Privacy Policy and Terms of Use documents.
All researchers apply to access de-identified data. They must submit proof of approval for research by an accredited Institutional Review Board (IRB) or ethics committee. All research must be shown to have a positive benefit for a community and/or individual. Bobby Jones CSF will also weigh in on whether this research will actually benefit you or the people you love.
The era of research being done to patients is over— now, research is going to be done for them.
Whether or not you are already a part of the Bobby Jones CSF International Patient Registry, you will need to register for an account on LunaDNA, confirm your email, and be given a code through your cell phone or Google voice number.
Next, you will be led through a consenting process and sign a consent form. You can review this consent agreement in detail here. In short:
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).
