Changes in scoliosis treatment due to Scoliscore

[flerc]

Huddger Tata I’m really so happy to read what you are saying. Everything, even the great achievements as that we are looking for, has a beginning some day. I think that today, we are Seeing it.

[Pooka1]

A way to get some sense of what these guys are working on besides reading the top shelf journals is to read the abstracts from the meetings of POSNA, SRS, etc. Not all of the work in the abstracts will make it to the peer-reviewed printed page so it is a "wider" net.

Another way is to search the clinical trials database to see what these guys have gotten funded and are working on. I posted this upthread. This is an even wider net.

The surgeons are one group. The other group is the PhD researchers... biochemists, geneticists, muscle physiologists, etc. They publish their peer-reviewed work in journals and in abstracts from meetings.

[Pooka1]

Here's the abstract book from the advanced spine techniques meeting this month...

http://www.srs.org/UserFiles/file/IM...al-program.pdf

[Pooka1]

From the IMAST pub in previous post

NEW! - Debates Sessions
During the concurrent sessions of the program, new Debates sessions will
be offered. The Debates replace the former Fundamentals sessions, and are
intended to present the advantages and disadvantages of various treatment
options available for specific conditions. More information on the Debates
sessions can be found in the Scientific Program, beginning on page XX.

[LindaRacine]

NEW! - Debates Sessions
During the concurrent sessions of the program, new Debates sessions will
be offered. The Debates replace the former Fundamentals sessions, and are
intended to present the advantages and disadvantages of various treatment
options available for specific conditions. More information on the Debates
sessions can be found in the Scientific Program, beginning on page XX.

When I heard about the debates several months ago, I was really tempted to try to get UCSF to send me to the conference. But, I thought sitting on a plane that long would really be torture, so gave up on the idea. Wouldn't you absolutely love to hear someone with vast knowledge debate some topics!

[Manuel Miguel]

The objectives mentioned in this forum are also shared by "Chiari & Scoliosis & Syringomyelia Foundation" since its creation: research, diffusion, teaching, and of course social assistance, as far as its economic availability allows.

Likewise, our founder Dr. Miguel Bta. Salvador Royo is one of the doctors who have carried out more publications concerning diseases of spinal traction. The publications are available on the following link:
www.ncbi.nlm.nih.gov/pubmed?term=royo%20salvador . All this after more than 35 years of research without any official or private assistance.

In many cases of diseases such as idiopathic scoliosis, Arnold Chiari Syndrome I, Syringomyelia and others, we see that some time after the operation like craniotomy or placement of plates or other has been performed to try to solve the patient's problems, symptoms that existed before the intervention, such as headaches, ramps, insensitivity, etc., are restored, that is because, as I have pointed out in other occasions, the cause has not been eliminated.

As an extension to the statistics that have been discussed above, I'd like to mention that like asthma that affects 8% of world population and diabetes (5%), the diseases caused by Spinal Traction also affect a large number of patients. This is why so many associations, foundations, and individuals around the world, among which is our foundation, try to raise awareness of world leaders to earmark more resources to research and treatment of these diseases, such as Idiopathic Scoliosis, and let them see that what they call "rare diseases", are actually not rare, but affect a very large group of people, as show the statistics.

I would also like to report that on Saturday October 15 in Palermo, Italy will be held the Fourth Conference of "Chiari & Scoliosis & Syringomyelia Foundation" organised by the "Associazione Italiana Sindrome Syringomyelia Arnold Chiari-I-Filum.Tomizzati Scoliosi-Onlus" (AI.SAC.SI.SCO) with the collaboration of "Mantia Medical Center", the french Association "AMIS des MOM" and Chiari & Syringomyelia Institut & Scoliosis of Barcelona. The title of the meeting is "Results of 400 cases operated on by means of the Filum Terminale. Chronic, acute and subclinical Neuro-Cranio-Vertebral Syndrome".

Attendance at the conference is free. More information on this event can be found on the following link:
http://www.institutchiaribcn.com/ind...=4505&id=15689 .

Greetings to all.

[Pooka1]

When I heard about the debates several months ago, I was really tempted to try to get UCSF to send me to the conference. But, I thought sitting on a plane that long would really be torture, so gave up on the idea. Wouldn't you absolutely love to hear someone with vast knowledge debate some topics!

Yes! I would love to hear where the disagreements are and why. Opinions are probably legitimately all over the board because the condition is just so variable.

If the IMAST meeting ever comes south of the Mason-Dixon in the US, I would try to attend those debate sessions although I'm guessing attendance at this type of meeting is much (?) more expensive that the scientific meetings in my field or any environmental field.

[Pooka1]

Greetings to all.

Manuel Miguel, when you are in a conversation, how do you know if you are following along? Also, are you even trying to be responsive here or are you just plugging along blindly?

Gracias.

[tata]

Here's the abstract book from the advanced spine techniques meeting this month...

http://www.srs.org/UserFiles/file/IM...al-program.pdf

Very interesting stuff, Sharon. Thanks for sharing it here.

[Pooka1]

Very interesting stuff, Sharon. Thanks for sharing it here.

Those were some great talks. Every year has great talks.

Those guys are clearly on the cutting edge of spine research (no pun intended).

[tata]

The objectives mentioned in this forum...

...Greetings to all.

Manuel, I see that since you've had no (profitable) luck on the Spanish forum, you're aiming now for this one, cutting and paste (previously translated, of course) almost the same paragraphs...

Well, unless there's a change of goals in your interventions, I forsee the same future for them here as on the other forum... No hard feelings meant.

[flerc]

Much more to the point is the aim of the site I just quoted (http://www.conquerchiari.org/). This is a non-professional group (started by a patient and run by non-medical people) which raises money for and funds research, as well as lobbying for federal funding for Chairi, and educating other patients.

Here's their research agenda, which I think is completely on target for a patient-led group:

Conquer Chiari has developed, and is actively promoting, the following Research Agenda:

Conquer Chiari Research Agenda: A Roadmap For Success

Goal #1: Reduce the average time to an accurate diagnosis to less than 2 years from time of first symptoms.

Objectives:
· Develop a standard, simple, objective definition and test of symptomatic Chiari
· Enable the introduction of new technologies, such as inexpensive, portable imaging, which will reduce the barriers to diagnosis

Goal #2: Develop an effective, widely adopted, and minimally traumatic standard of care.

Objectives:
· Design, and encourage the adoption of, a standard outcome measure, such that the results from different studies can be compared and combined
· Establish whether the surgical variations that currently exist have a significant effect on long-term patient outcomes, and further develop a standardized surgical approach
· Encourage the development of minimally invasive surgical techniques
· Pursue non-surgical treatment approaches which don't just address symptoms, but are targeted at the core problem(s)

Goal #3: Minimize the impact that Chiari has on the quality of life of patients.

Objectives:
· Develop, and encourage the adoption of, a Chiari Impact Measure, which takes into account patient focused issues such as career, family, economics, recreation, and socialization
· Understand, and develop treatments for, the neuropsychological effects of Chiari, including both cognitive and emotional manifestations
· Develop widely accepted protocols for physical, occupational, and other types of therapies designed to maximize functional capabilities
· Enable the development of innovative technologies and treatments targeted at the neuropathic pain and loss of function associated with Chiari

Goal #4: Understand the pathophysiology, natural history, and epidemiological characteristics of Chiari.

Objectives:
· Establish, with reasonable accuracy, the incidence and prevalence of Chiari and Chiari related syringomyelia
· Characterize, and quantify, the Chiari experience, such as average age of diagnosis, time to diagnosis, number of doctors seen, major symptoms, etc.
· Develop a sound theoretical model for the pathophsyiology of Chiari, which explains how symptoms develop, and will enable predictions about who needs surgery, who will develop syringomyelia, etc.
· Identify and characterize the genetic basis of Chiari

Hudgger, it’s good to know about this kind of groups. I think is a good example to be followed.
Coming back over the list of questions, I think that that is crucial: ‘Where is the money coming from for scoliosis research? Or, is there any funding directed towards it?’
Many questions may be done around this, as the following: How Betz got to work in other kind of surgery inside the medical community?. I don’t know how is the protocol. Any surgeon, physician, researcher.. belonging to that community may say Well.. I want to create a new kind of solution for scoliosis, so give me the resources I need for that.. ?
Of course I suppose that some feasibility study should to be done before giving the resources, but anyone inside that community may ask for something like that?. He received 100% of financial? As I know, other surgeons have had to finance their own projects.

[flerc]

Yes, may be a unique case. It would be important to talk with those surgeons.

[flerc]

I was reminded this morning that I've overlooked the main source of funding for scoliosis research - corporate money -

As in every problem, there are 'good' facts and 'bad' facts. This seems to be a very good fact, but unfortunately there are many bad facts. I think the worst of all is that vertebral fusion is used mainly in other spine problems and it's an incredible billon dolar business and surely don't want to have competition http://toyourhealth.com/mpacms/tyh/a...7&pagenumber=1

[flerc]

Yes of course is something bad, belonging to the ‘we live in a business oriented world, not in a wonderful one’ fact. Surely it is the most important fact related with our problem that may not be altered by the solvers (us).
Actually I saw the infusion of corporate money as a good fact, because may be that other kind of surgery less invasive than fusion or also some kind of devices would be a good business too.
But anyway, fusion is already one century old and it seems to be too much profitable to allow some kind of competitors.