WHAT IS THE 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 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.
Physician-reported data will be added to supplement all patient information through the implementation of EHR integration set to be completed late this year or early next. 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 AND ABROAD
Having an international patient registry means being able to answer the most fundamental questions about the disorders that are not well understood, even by the experts.
- What is the actual incidence and prevalence of Chiari malformation, syringomyelia and related disorders?
- What are the causes and risk factors associated with Chiari malformation? Are they strictly genetic or also environmental?
- What is the pathophysiology of syrinx development?
- What other clinically-relevant disorders are complicating the symptoms and treatment methodology?
- What is the best treatment for these disorders?
- When is treatment really necessary?
- What is the public health and health utility burden of Chiari, syringomyelia and related disorders?
Information like this is absolutely essential for lobbying government and advocating for improved care within the healthcare sector.
The registry will help international patients, too. Having an international patient registry is also 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 can be edited or terminated. 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.