BOBBY JONES CSF INTERNATIONAL PATIENT REGISTRY

We are always updating and improving our registry to focus more on things that matter to patients and their families.

Check back often for the latest news about ongoing studies and news about new studies being proposed!

Have a specific question that you think should be studied in Chiari malformation, syringomyelia and related disorders? Email us!

WE’RE GETTING A FACELIFT!

We are in the process of some big changes for our international patient registry. These upgrades will allow seamless integration of the medical record, patient portals, genetic testing and more! This will make the registry even more robust for researchers. At the same time, your privacy and your ability to control your own data are the most important aspect of this registry. Updates soon.

Once our registry upgrade is complete, check back for materials that help you with the registry process, including:
  • 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!

NEW SURVEY AVAILABLE: POTS & ORTHOSTATIC INTOLERANCE

Some individuals with Chiari and related disorders have problems with autonomic dysfunction– in particular, postural orthostatic tachycardia syndrome (POTS) and orthostatic intolerance. Those are some big words that really just means that some patients can get woozy or faint when changing positions from lying down, sitting or standing.

We have a new study going on in the registry to learn more about how much these symptoms impact patients with Chiari. So, if this sounds like you or your loved one, please fill out the Upright Intolerance Survey today!

Chiari malformation (CM), syringomyelia (SM) and related disorders (RD) affect millions of people worldwide. Starting on the path to improved care can feel overwhelming.

An important early step is to establish the Bobby Jones CSF International Patient Registry. This registry of patient-reported data will serve as an important tool to improve the lives of people with Chiari malformation, syringomyelia and related disorders. Registries like this are essential for tracking the identification and diagnosis of people with these disorders and monitoring their health.

WHAT MAKES THIS REGISTRY DIFFERENT?

Partnership is key.

By partnering with the Promise for Engaging Everyone Responsibly (PEER) and other like-minded organizations, we will are able to leverage our combined voices and integrate electronic health records (EHRs). Patients and caregivers will be able to link their patient portals from their physicians’ offices to supplement all their patient-reported information. This will help provide objective, scientific data on top of the incredibly important quality-of-life data that each participant provides.

Every patient with Chiari, syringoymelia and related disorders is different. Being able to combine individual symptoms and medical data together will be critical to understanding these disorders.

Patient voice is critical to understanding these disorders.

The patient voice has been historically undervalued in research, but that is changing. Researchers and medical professionals are starting to understand that in order to truly measure whether medical interventions are helpful, they need to know what patients think. Do patients and their families really feel better after surgery or any other treatment?

We can’t know the answers to these and other important questions without your input.

You become a researcher in your own right!

Normally, joining a registry means you will be a part of that one study, only. This registry is different because researchers will be 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 future studies that becomes available. In a way, you become your own researcher!

Your participation advances research right now.

Research takes many years. The projects that are started today will yield answers in the future. It’s sometimes very easy to get overwhelmed and upset at the slow pace of research, but it is so important to remember that every little bit you support these efforts today, helps bring us closer to real changes for millions of people and families in the future.

Never forget: your impact matters.

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

THIS REGISTRY WILL HELP PATIENTS IN THE US

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?

Information like this is absolutely essential for lobbying government and advocating for improved care within the health care sector.

Bobby Jones CSF laid the groundwork for this work in 2013 when >50 medical professionals from institutions around the world collaborated and created Common Data Elements for Chiari.

THIS REGISTRY WILL HELP INTERNATIONAL PATIENTS, TOO!

Having an international patient registry is also useful globally. Having standardized measures will ensure that data collected around the world accurate and can be compared from research study to research study.

Being able to compare information from different countries can be especially helpful when lobbying for improved care within huge organizations like the World Health Organization and similar powerhouses.

THIS REGISTRY CAN IMPROVE HEALTHCARE QUALITY AND REDUCE SPENDING

A registry like this one will help us measure the effectiveness of health care programs and treatments. We want to see if the current treatments are working for patients– and if they are not, we can then advocate that those treatments to be improved. This can lead to less repeat surgeries, fewer hospitalizations and the development of new treatment options can keep medical bills from skyrocketing.

Improvement in treatment will not only keep costs down, but more and more patients will have better quality-of-life!

BUT IT DEFINITELY COSTS A LOT OF MONEY…

Currently, the government will not fund patient registries because they are too expensive. It is entirely up to the private sector and nonprofits to create and fund these efforts. Groups like us and other private supporters bear the greatest burden of funding what is arguably the most important type of research: patient-informed, long-term studies.

You can help us support this mission by hosting your own fundraiser, having your company support with a matching gift, find sponsors, host a unite@night walk, or just collect some spare change as you get your morning coffee on the way to work! Every little bit you give shows someone living with these disorders  that you care.

…AND NONE OF THIS MATTERS IF YOU DON’T PARTICIPATE!

At the end of the day, good research relies on YOU!

You are the critical key that we need to unlock answers for the millions who struggle with Chiari malformation, syringomyelia and related disorders.

LOGIN/JOIN THE REGISTRY NOW

Get started today and take all the surveys you can!

GOT A QUESTION? Any problems/questions please contact: Kaitlyn by phone (718-966-2593) or email (kesposito@bobbyjonescsf.org).

 

Revised: 09/2020