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Transcript
Well, thank you very much. I’m not going to take the full 25 minutes I’ve been allocated, but I do want to talk about something that I think is very important. It’s important to me. I think if you’re in this room, it should be important to you. And that is a new society — a society for physicians that is dedicated to education, research, and improving care for people with spinal CSF leak. And that is the ISSCL, the International Society for Spinal CSF Leak.
So why do we need a society? This is something that a number of us over the past several years have been talking about. We started talking about it several years ago. I remember at Jürgens’s conference in Freiburg we were having these discussions. But as you can see from the proliferation of literature on the topic and the attendance at this conference, there’s really a growing interest in this field, and that means that a larger and larger number of centers and physicians are taking part in taking care of patients with CSF leak. And I think it’s really desirable to have a forum for people who are involved in this pursuit to talk about best practices, to have the fun of doing things like this, like discussing controversial topics, to disseminate knowledge, and also to promote research, which is incredibly important.
The other thing is that in many cases, there are meetings that talk about CSF leaks, but those are generally siloed according to specialty, medical specialty. So you have radiologists talking about radiology things at their meetings. You have surgeons who might or might not be talking about surgical things at their meetings. Neurologists certainly talking about this at headache meetings. But if you look around the room, the people who are here are a mix. And the perspectives that each different specialty brings inform what the rest of us do. And so it’s really critically important. We felt it was really critically important to make this truly multidisciplinary endeavor for all different medical specialties.
Now there are a variety of really good patient advocacy organizations, and I am fortunate to be associated with a couple of them. And those have been very effective tools for what it is that they are set up to do, which is provide advocacy for patients, to provide information to patients, to provide a forum for patients to come and talk to each other. But they are predominantly for patients. And even though physicians have an important role to play in those societies, with the number of people who are now interested in this topic, there are insufficient opportunities for physicians to be involved purely through those patient advocacy groups. So we wanted a forum specifically for health care professionals to be able to talk about and deal with these issues in a way that is complementary to, that works hand in hand with the patient advocacy organizations but has a parallel, but slightly different mission.
To the extent that we can develop guidelines and best practices to guide people who are just starting out in this field, we need to be able to do that, and that’s important in a variety of different contexts. As more and more people are starting to be involved with this field, we’re seeing a proliferation of a lot of different modes of practice, a lot of different things that people are doing, and there is a need, I think, for some guidance for those societies—not to make everybody do exactly the same thing, but to have a general consensus on what is the best practice, what are some broad guidelines for things that you should be doing, and also to advocate for the resources that we need to be able to take care of patients. So with governmental bodies and private payers within our individual respective countries, and that is a role that such a society could fulfill.
And I think one of the things that I have really found to be the most gratifying part of the past several years is the opportunity to meet, become friends with, enjoy my time with, have fascinating discussions with the people in the room here, all of you. And it’s a chance to collaborate.
If you look at the number of papers that have been presented today, the number of those papers that have multi-institutional authors has gone up dramatically, certainly from the time that we started publishing, which is to all of our benefit. And for people who are just starting out in the field or starting out in research, they need the opportunity to find mentors, mentors who can help get them started.
And so one of the critical roles, and I really can’t put enough emphasis on this, one of the critical roles of this society is to become a forum for friends, a forum for people to help promote each other. Because the reality is that there are a lot of patients who suffer, and there are not enough physicians to take care of them. And so we cannot become so provincial that we focus on our own individual concerns and individual promotion. We have to promote the care of this field and promote the development of this field across many people who are now not involved or just beginning to get involved.
And so I want to, before going any further, I want to pause just for a second and list the people here who have been instrumental in helping to get this society off the ground, so to speak. And even though we haven’t really started yet, there has to be a lot of work that goes in on the front end. And in some cases it’s interesting work, and in some cases it’s not so interesting work. You have to register your corporation. You have to pay your taxes. You have to order checks. You have to write bylaws. You have to form committees. You have to attend meetings and things like that. And some of that work is very difficult. And the folks who are listed on the screen have all been extremely helpful and are really the reason why I can stand here today and tell you about the opportunities and the potential for the society. So I want to thank each and every one of them for the help that they’ve contributed so far.
So what are we? Well, the ISSCL is a 501(c)3 charitable organization which, if you’re in the US, it means that it is a charity, and so contributions to the society are tax-deductible. And we also have to follow certain rules, like having bylaws and things like that legally. It’s incorporated in the state of North Carolina, but is intended to be international, which these days draws a little extra scrutiny in my country. But the goal is clearly to be an international community, and the mission statement is to improve medical care for people with spinal CSF leak through education, coordination and dissemination of medical research, promotion of best medical practices, and by supporting and conducting educational and scientific meetings. And I think this meeting that you’re here at today is a meeting that was kindly put on by the folks at Cedars-Sinai who have done an amazing job with this meeting.
And I think that where we would like to be in the future is having an annual meeting, aspirationally an annual meeting supported by or sponsored by, endorsed by, or run by the society. And the goal would be to have those meetings in a variety of different locations all around the world to give access to physicians whether you’re in North America, in Europe, in the Middle East, or South America or Asia. All of these places have patients with spinal CSF leaks, and we need to be encouraging the development of the field in those locations.
So what are our immediate goals? I think one of our immediate goals was to set up an organizational structure so that I could ask all of you who are here who are not current members to enroll, to become members of the society, and I would invite each and every one of you here to become a member. It’s not difficult or complicated. It is not a highly selective or insular process. We have membership, all kinds of membership opportunities for people who are just getting started, for people who are well established. If you are in training, it is free to become a member, and you should take advantage of that. The founders who I listed earlier have helped really get us to the point where we can take new members.
We have a functioning website. We have a process for intake. We have a process for getting people to pay their dues and all that sort of stuff. And then we are soon going to be rolling out educational information resources for folks who are members. So access to literature, access to educational materials, and other things like that.
We need to fundraise. We need to be able to have money to put on society meetings, to sponsor research endeavors and things like that. It’s an expensive business to hold a meeting like this, and so we need to be able to gather resources.
We want to create that educational program, including online and social media-based campaigns to share research, to let people know what’s going on, to make it easy for you, if you don’t do this or think about this full-time, to have access to a concise summary of what’s new and what’s best. And we want to be able to organize our own meetings, but also to promote the meetings of people within the society who are holding their own meetings.
This society is not intended to be the exclusive purveyor of information or the exclusive source of meetings, but we really want to be able to help you promote your meeting if you want to run a meeting. We also want to prevent us from tripping over each other and all having meetings at the same time. And so providing a forum for coordination I think is important.
So how can you join? Well, here’s our website: isscl.org. You can go. It’s a very user-friendly application. And I want to thank Eike and Tomas Dobrocky who helped set up our website. And Eike came up with our little icicle icon here that has become the icon for our society. It’s the dripping, a little fluid. You know, it’s like a spine with a little leak. It’s very nice.
You can become a member if you are a physician, an MD, a DO, MBBS, or whatever the equivalent is in your home country, or if you’re an advanced practice provider, so a nurse practitioner or a PA or the equivalent in your home country. Again, this is a society targeted at healthcare providers who are taking care of patients with SIH.
Once you’re involved, there are a variety of different ways that we could use your help. Getting new members. Connie Deline and Deb Friedman have done an excellent job being in charge of our rules committee, drafting bylaws, but we still have to define a lot about the regular function of the society. Helping to plan, coordinate, and think about meetings in the future, how to promote research, how to promote education, how to create standards and guidelines.
One of the functions of this society, you know, one of the things we heard about yesterday is that the diagnostic criteria that we often use for SIH, the ICHD-3 criteria, are headache guidelines. And they are part of a big package of diagnostic criteria that come from very good headache neurologists who treat all kinds of headaches.
But I would venture to say that the folks who are involved in this room, whether you’re a headache neurologist or not, would want to be in a position to have diagnostic criteria that could be applied whether or not you have headaches. And those sorts of missions, the ability to come up with diagnostic criteria, the ability to help define what the appropriate outcomes measures that we should be using, those are all really important roles that a society can help contribute to.
Website and social media. Eike and Tomas have done a lot, much more than I could have done on my own. So they get a lot of credit. But generating content that keeps people engaged is an ongoing process. And then finally, philanthropy. Charles Louy has been the leader so far in that group, but we do want to be able to get charitable and other contributions to help support the society.
So I’m very excited about this organization and, as I said, if you are in this room and you’re interested in spinal CSF leaks and you’re taking care of patients with this condition, we want this society to be a home for you. And I also want to thank Wouter, who serves as co-president, Grand Poobah of the society, who’s been doing this longer than I think anyone else here and has been a great partner for me in setting this up. So, thank you very much.