WHAT IS THE BOBBY JONES CSF INTERNATIONAL PATIENT REGISTRY?

 

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.

But what makes this registry different? By partnering with the Platform for Engaging Everyone Responsibly (PEER) and other like-minded organizations, we will be able to leverage our combined voices and integrate the electronic health record (EHR). Patients and caregivers will be able to link their patient portals from their physicians’ offices to supplement all their patient-reported information. This helps provide scientific data on top of the incredibly important quality-of-life data that every participant provides.

By combining these two types of information, we will be able change the way medicine is practiced and the way patients are diagnosed and treated for Chiari, syringomyelia and related disorders.

AN INTERNATIONAL 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 healthcare sector.

BUT THE 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 comparable.

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

IT CAN IMPROVE HEALTHCARE QUALITY AND REDUCE SPENDING

A national registry can facilitate the measurement of the effectiveness of health care programs. Basic data, such as increases in the number of patients diagnosed, or the life expectancy of people with these disorders, are useful in evaluating the worth and success of various programs to improve care.

This means, that current and future treatment options can be measured to see if they are working in their goals to help patients– and if they are not, they will be improved or ended. This will also keep costs down as more and more patients improve in quality of life and need less frequent surgeries, hospitalizations and other care options that send medical bills skyrocketing.

Bobby Jones CSF created the standards necessary for all this data to do its job! In 2013, a collection of over 50 physicians from institutions all around the world  agreed to collaborate and create Common Data Elements for Chiari malformation. These are the data points that researchers are using in this registry. With them safely in place, we can compare these results to other work done at other organizations and academic medical centers and improve the lives of patients!

IMPORTANT POINTS…

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.

Registries cost a lot of money.

Currently, the government will not fund patient registries because they are seen as too expensive. Because of this, it is entirely up to the private sector to create and fund these efforts. This means that Bobby Jones CSF, other like-minded organizations, and private supporters will bear the greatest burden of funding this registry.

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.

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 how strong your impact can truly be.

 

 

 

Revised: 06/2020