WHAT IS AN INTERNATIONAL PATIENT REGISTRY?

Chiari malformation (CM), syringomyelia (SM) and related disorders (RD) affect millions of people worldwide. Starting on the path to improved care is daunting, to say the least.

An important early step is to establish the Bobby Jones CSF International Patient Registry, which will be a collection of patient-reported data that can serve as an important tool for improving the lives of people with CM/SM/RD. Importantly, physician-reported data will be added to supplement all patient information. Registries like this are essential for tracking the identification and diagnosis of people with these disorders and monitoring their health. They also help experts set priorities for health care.

AN INTERNATIONAL REGISTRY WILL HELP PATIENTS IN THE US

Having an international patient registry means being able to answer the most fundamental questions about the disorders that, quite frankly, are not well understood even by the experts!

  • 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 very useful globally. Having standardized metrics will ensure that the global data that is collected is accurate and meaningful.

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 WILL IMPROVE HEALTHCARE QUALITY AND REDUCE SPENDING

Quantifiable results contained in a national registry facilitate the measurement of the effectiveness of healthcare 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 development 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 edited or removed completely. 

This will also keep costs down as more and more patients improve in quality of life and will need less frequent surgeries, hospitalizations and other care options that send medical bills skyrocketing.

The truth is, research takes many years. Sadly, most adults that are affected by CM/SM/RD must accept the fact that we may never have the answers for them. However, the projects that are started today will yield answers for children who are not yet born and the people who love them.

Bobby Jones CSF has already started the process to create the standards necessary for all this data to do its job! Since 2013, a collection of over 50 physicians from institutions all around the world have agreed to collaborate and create what are known as Common Data Elements. These are the data points that researchers will use in this registry, and with them safely in place, all of this work will improve the lives and outcomes for patients!

WHY Bobby Jones CSF NEEDS YOUR HELP

Currently, the government will not fund patient registries due to the high-cost and high-risk nature of their existence. 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 donors will bear the greatest burden of funding this registry. We need all the help we can get to make sure that this important effort gets underway… and every little bit helps! Host your own fundraiser, have your company support your cause through a matching gift, talk to companies that you believe may sponsor a Bobby Jones CSF event, host a Bobby Jones CSF unite@night walk, or just collect some spare change as you get your morning coffee on the way to work!

Every single donation you give to Bobby Jones CSF, shows someone affected by these disorders that they are not invisible– you see they are suffering… and you care!