The Bobby Jones Chiari & Syringomyelia Foundation (BJCSF) is committed to advancing research, performed not only by those directly affiliated with our organization, but anyone who is interested in this kind of research–patients, scientists, clinicians and organizations included! That’s why we are committed to creating an international research database.
By creating a database of this size and scope that includes not only a huge amount of data but many different types of data, researchers will have much more information when they do their studies. With more information, there will be more scientific evidence. With more scientific evidence, there will be eventually be new drugs and surgical techniques, along with better treatment options. Basically, patients both young and old who struggle with Chiari, syringomyelia and related disorders will one day be able to feel better, and stay feeling better.
In order to have a database like this, it needs to be truly comparable across many academic institutions and private clinical offices around the country and world. To do that, everyone needs to speak the same “language”. What is one doctor’s idea of “Chiari”, may not be the same as another’s idea of “Chiari”.
Differences like this in basic definition make it almost impossible to build good, irrefutable science. But it doesn’t have to be this way, anymore. The concept of Common Data Elements, or “CDEs” was originally developed by the National Institute of Neurological Disorders and Stroke (NINDS) at the NIH.
The first set of Common Data Elements (CDEs) for Chiari I malformation were developed in partnership with the NINDS/NIH, experts in the field and the Bobby Jones Chiari & Syringomyelia Foundation. They were published in Neurosurgery in 2019.
The purpose of the Chiari I malformation CDEs is to make better Chiari research happen. CDEs provide a standard definition for the most commonly used pieces of research data in the study of Chiari and related disorders. Those standard definitions make sure that all researchers are “speaking the same language”.
Watch previous SEA Board Chair, Dr. Mark Luciano explain a little more about how CDEs can help change the world of Chiari research:
Dr. Luciano said all that way back in 2016!
Since then, the CDEs were published in the journal Neurosurgery (2019). They are continually reviewed, refined and used by researchers to better understand Chiari and related disorders. You can find a full list on the NINDS website.
A database like the one Bobby Jones CSF is envisioning will finally provide the quality, peer-reviewed research that can allow doctors to give real answers to the families who struggle with these disorders.
Even though a bulk of the scientific work will be done by researchers, Bobby Jones CSF wants to ensure that any future database projects remains 100% patient-centered… so we need your help!
We want to make sure the researchers who are studying Chiari, syringomyelia and related disorders are doing research that will actually be able to help patients in the future. In order to do that, we want you, the patient, to tell us what are the most important problems that you think an international patient registry and research consortium should address.
There are so many different problems that members of our SEA Board and other interested scientists/clinicians want to see solved to help patients like you… but everyone needs to do their part! Here are a few examples of problems that research can help solve:
These are all types of problems that can only be solved using data from a large patient registry where it is handled with care by scientists and clinicians. Patients and organizations like Bobby Jones CSF will provide their input, but the data will be analyzed only by those who are scientifically qualified to do so!
Once you’ve thought about the specific issues you’d like scientific research to address in the future, send your thoughts to Bobby Jones CSF staff member, Kaitlyn Esposito!
