common data elements

Bobby Jones CSF Database & CDE Project

The Bobby Jones Chiari & Syringomyelia Foundation (Bobby Jones CSF) 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.

WHY IS AN INTERNATIONAL DATABASE IMPORTANT FOR PATIENTS?

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… forever.

The quality, peer-reviewed research that a database like this can provide will finally allow doctors to give real answers to the children and adults who struggle with these disorders.

Watch Bobby Jones CSF SEA Board Vice-Chair, Dr. Mark Luciano, explain a little more about how CDEs will help change the world of Chiari research:

…BUT HERE’S THE EXCITING PART:  YOU  CAN HELP FIND THE ANSWERS!

Even though a bulk of the scientific work will be done by researchers, Bobby Jones CSF wants to ensure that this project 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 hat are the most important problems that you think an international patient registry and research system 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 the symptoms that frustrate me the most: _________.
  • I have had ____ surgeries and ____ were unsuccessful.
  • This is my definition of a successful surgery: ___________.
  • __________ are the basic quality of life issues I face every day.
  • Medical bills have played the following role on my finances: _________.
  • These are the personal stresses I face related to my disorder: ________ .
  • What happens if I never have surgery?
  • … there are many more, so don’ forget to think of your own!

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!

PAST CDE/REGISTRY MEETINGS

Feel free to watch and learn more about what went on at the original 2014 Bobby Jones CSF Think Tank meeting to learn more about what this project entails.

*If you are a clinician who would like to become involved with this project, please send an inquiry to info@bobbyjonescsf.org and we will get back to you as soon as possible.

Dr. Joanne Odenkirchen: NIH/NINDS Perspective & Intro to CDEs

Dr. Mark Luciano: Overview of Database Project & CDEs

CSF Patient Database Committee: Working Group Summaries