When Bobby Jones CSF scientists and clinicians reviewed the existing medical research on Chiari malformation, we realized that there are no studies to-date on Chiari malformation that rise to the best level of evidence. Without this, we won’t have accurate information to diagnose & treat Chiari malformation, syringomyelia and related disorders.
There’s a common saying among doctors who treat these conditions: “If you’ve seen one patient with Chiari, syringomyelia or a related disorder, then you’ve seen one patient with Chiari, syringomyelia or a related disorder…” Patients are all very different. Symptoms, syndromes, and even things as simple as gender, age, and race/ethnicity all impact diagnosis and treatment.
Up until now, most research in this area has been conducted at single institutions, looking back at data that was collected but not standardized. Even the multi-center studies have flaws. Often, these studies include fewer than 200 people, making it difficult to draw conclusions.
Since it has been hard or impossible to do bigger studies for Chiari malformation and syringomyelia, it has been even harder to do research that can prove how to best diagnose and treat these disorders. Worse, it makes proving and disproving the existence of co-morbidities almost impossible. All of these issues have made much of the previous Chiari, syringomyelia and related disorder research pretty unreliable when it comes to knowing what to do for complex patients.
Although the currently completed studies laid the groundwork, there is clearly still a need to do research using the most rigorous of scientific methods… that’s where the Chiari Clinical Research Network comes in…
The Chiari Clinical Research Network (CCRN) is a network of doctors uniting to develop research studies that will produce an international collection of data about Chiari malformation, syringomyelia and related disorders. The data collected will allow new, innovative research projects to move forward and fundamentally change the way these disorders are diagnosed and treated.
Scientific validity is a key goal of this project. Bobby Jones CSF has already worked diligently to improve this space in this research field, creating the Common Data Elements (CDEs) with the NIH/NINDS. CDEs provide a common language and a standard way to measure things, like findings on MRIs, to “compare apples to apples.”
The CCRN will allow us to enroll more patients than ever before, in more geographic areas than ever before. The large number of patients being observed in the CCRN will allow for better research going forward. Including a large number of patients validates the findings and makes the results of the study better and more reliable.
International multi-institutional participation in the CCRN ensures diverse populations are included in the studies. This allows for the sharing of research between institutions which provides more valid research results.
Most importantly, Bobby Jones CSF will be an integral part of building this network.
We are dedicated to ensuring both the patient experience and voice are present at every milestone of the CCRN. From initial development (which we’ve already started!), to patient recruitment, to researcher outreach and to follow-up with participants and the public… we will keep you in the loop throughout the entire development of this network.
Bias is something that has to be managed in any scientific study, not just studies for Chiari, syringomyelia and related disorders.
The CCRN is innovating an entirely new method to remove bias in scientific research. Bobby Jones CSF, a patient advocacy group and objective third-party between patients and the clinicians who are treating them, will collect quality-of-life outcome data. Sometimes, when patients participate in studies like these, they may consciously or unconsciously change their answers about their outcomes and quality-of-life if the person asking is the doctor or an employee of the doctor who treated them.
To our knowledge, this has never been done before in any medical field. This is an entirely new idea that will make the CCRN and all the studies it produces even more scientifically robust.
The complicated studies frequently done in big research areas like cancer, heart disease and diabetes will finally be within our grasp. This will pique interest of new researchers, too– speeding up research and leading to answers, even faster as more people start to study these conditions with more ease. This means we will finally have a way to find answers for those who are suffering!
We will be updating this page as we develop the CCRN! Come back to learn more about:
We have officially drawn up the by-laws for the initial academic institutions that have signed on to this project. We will share the initial sites named on this project when the list becomes available!
This is the most exciting part: we are already developing the first, ever clinical trial that will be run through the CCRN. The protocol for the study is in development as we speak.
To our knowledge, there have been NO other international clinical trials for Chiari, syringoymelia and related disorders… ever.
We are extremely excited to be pioneering this research, with your input at every step! Check back for more updates as this project moves forward
If you are able, please help us ensure this project goes through as planned by supporting our ongoing fundraiser for this project. You can also sign up to host a Solo or group unite@night walk, which will, in part, be supporting this research in 2020.