INTERNATIONAL PATIENT REGISTRY FOR CHIARI & SYRINGOMYELIA

**If you are having issues accessing the registry, please contact Kaitlyn by email (kesposito@bobbyjonescsf.org) or phone (718-966-2593).

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.

 

CURRENT STUDIES

*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).

Impact of the 5mm Rule.The so-called “5mm rule” in Chiari treatment has come into question because it does not accurately predict symptom severity or treatment success. In it, a patient is considered to have a Chiari if their cerebellar tonsils are located at 5mm or greater below the foramen magnum, or the opening at the top of the spinal canal. The goal of this survey is to determine whether or not this rule has impacted the likelihood of accessing neurosurgical Chiari care over the years.

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 closing this survey on June 1, 2022! If you want to participate, time is running out!

 

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 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?

  • Researchers get more robust data in real-time.
  • You have full control of your own data at all times.
  • Your doctor’s notes and medical records can be added to your anonymized data.
  • You can upload genetic reports at any time.
  • We’re constantly updating and protecting patients and families.

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

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). Our 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.

WHAT CAN I EXPECT?

  • Answer surveys and participate in studies. You’ll be able to answer questionnaires about your condition, your symptoms, and other issues (the pandemic, stress, sleep, etc.), but you’ll be using a new, much more user-friendly interface.
  • Include your doctor’s notes for objective data. You’ll be able to connect your patient portal to your registry account and help researchers identify medical information with your survey responses. This will benefit research and will also create a centralized location to view ALL your medical records in one place.
  • Include genetics testing results. You can safely contribute genetic data results from places like 23andMe, Ancestry.com, or even your local labs.
  • Share your data with interested researchers. You choose to share your data with researchers who are interested in helping answer questions that matter to you. Researchers will only be able to access your data after confirming their study protects patients rights. Every survey and study requires IRB approval before it launches on the platform. Your data will always be anonymized and it cannot be removed from the system, unless you choose to consent to a study that specifically requests otherwise. Bottom line: you control your data at all times. No one else. Not even us.
  • You can choose to collect ownership shares in our partner company, LunaDNA. This is entirely optional. The company LunaDNA is owned by people who share their data (visit the LunaDNA Help Center for more information).
  • Get access to up-to-date information about Chiari, syringomyelia and related disorders. This information will be curated by Bobby Jones CSF and based on the data you give us in 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.

MORE ABOUT OUR DATA PROTECTION PROMISE.

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.

What requirements are there for someone to access my data?

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.

What can I expect from the consent process?

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:

  • Your data never leaves the platform without your explicit permission.
  • You can delete your data or revoke your consent at any time.
  • Your personal information is never shared without your permission.
  • All research is scrutinized to protect individuals participating in research.
  • BJCSF and LunaDNA do not sell data for advertising, marketing, or any other purpose

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: 5/2022