SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby Jugular » Fri Sep 23, 2011 10:28 am

Now here's a government prepared to get the job done.

SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH



Health Minister Don McMorris announced today that Saskatchewan is finalizing a partnership with U.S researchers and is prepared to fund the participation of Saskatchewan patients in a multiple sclerosis (MS) clinical trial in Albany, New York.

The province is working with a research team led by Dr. Gary Siskin, a vascular and interventional radiologist at Albany Medical Centre.

"Patients need answers as soon as possible about the efficacy of the Liberation Therapy as a treatment for MS," McMorris said. "We owe it to them to explore every opportunity to advance MS research and find answers about this treatment. This clinical study will enable Saskatchewan patients to be involved quite quickly in a controlled, reputable research process."

"Our research team is very excited about this partnership," Dr. Siskin said. "We welcome the opportunity to involve Saskatchewan patients in our efforts to gather reliable data that can help determine whether angioplasty effectively relieves MS symptoms."

Once the partnership is finalized, Saskatchewan MS patients will be advised how and when they can apply to participate. It is anticipated that between 80 and 90 Saskatchewan MS patients would be involved in the clinical trial. The province is setting aside approximately $2 million to cover costs and patient expenses.

In October 2010, Saskatchewan became the first jurisdiction in Canada to commit funding for clinical trials of the Liberation Therapy as a treatment for MS. The province enlisted the Saskatchewan Health Research Foundation (SHRF) to form an expert advisory panel and issue a call for research proposals that would lead to clinical trials conducted in the province. That process did not result in a suitable research proposal.

In July 2011, the federal government announced that the Canadian Institute for Health Research (CIHR) would proceed with early-stage pan-Canadian research into the Liberation Therapy.

McMorris said Saskatchewan still intends to support the CIHR process.

"We are very interested in participating in national research," McMorris said. "Our concern is that it may be two or three years before that process runs its course, and even longer before it arrives at a conclusion about the effectiveness of the Liberation Therapy. Saskatchewan is not willing to leave our patients in limbo until that work is completed."

The MS Society of Canada, Saskatchewan Division, is encouraged by the continuing support by the provincial government for MS research activities and we look forward to positive developments from clinical trials regarding venous angioplasty. As always, our first concern is that people living with MS have options when it comes to treating and managing their MS.
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby dlb » Fri Sep 23, 2011 6:40 pm

80-90 PwMS get to participate. That will be some lottery for the MSer's in SK. It is a wonderful start for Canadians with MS and typical of Saskatchewan to be leading the way. Healthcare has always been front & center in SK.
I am impressed at the wisdom in making a study from a group of patients to be treated at a facility that has some experience, rather than muddling through the learning process.
Congratulations to the government and the people of Saskatchewan!
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby CD » Sat Sep 24, 2011 9:46 pm

Dr. Gary Siskin is my doctor. His staff said he is booked until the end of 2012. I was told this when I went for my 9 month follow-up recently. Hmm He is a wonderful Dr. and his colleagues and staff are amazing.

As for the Saskatchewan pwms who participate, I wonder if the clinical trial will allow stents to be placed, and if flying will be postponed for a few days after the procedure? Also, what post-medication will be prescribed, all the same?.. and will follow be in Albany or Canada?

So many questions are running through my mind about this trial. :?
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Last edited by CD on Sat Sep 24, 2011 10:58 pm, edited 1 time in total.
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby Cece » Sat Sep 24, 2011 10:48 pm

This is good news! I too am glad they partnered with a doctor who has experience doing the procedure, rather than start from scratch.

Dr. Siskin is booked through the end of next year? That reminds me of how booked Dr. Simka was in the beginning. Perhaps Dr. Siskin was already including these 80 - 90 patients in that estimate of how booked he was.

Is this separate from his current research or would these patients be part of the randomized controlled trial he already has underway? Will there be a placebo group with these Saskatchewan patients?

Kudos to Saskatchewan and to Dr. Siskin and to the 80 - 90 MS patients who will directly benefit and to all of us who benefit by the research getting done.
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby dlb » Sat Sep 24, 2011 11:15 pm

Cece,
I am guessing that Dr. Siskin's booking to the end of 2012 likely includes this set of 80-90.... because from what I'm reading, this has been in the making for a bit of time now. I also read that there will be about a 2 year time commitment expected of the patients that participate. I think that the parameters of the selection process are to be disclosed in a short while...?? I wonder what those parameters are going to be?? As I understand (maybe it is just my own interpretation....??) there will be a study in Canada, but follow-up? I have not heard any details on f/u!

It seems like a big step... how can the government of SK offer to send a group of people and pay their expenses and then deny the same treatment to many others..? I feel that we will see something happening in SK in a timely manner, but maybe that is wishful thinking!
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby Cece » Sun Sep 25, 2011 12:27 am

dlb wrote:It seems like a big step... how can the government of SK offer to send a group of people and pay their expenses and then deny the same treatment to many others..? I feel that we will see something happening in SK in a timely manner, but maybe that is wishful thinking!

I would think a good next step would be to allow pwMS to pay for treatment within Canada, maybe?
I wonder what percentage of people who hear about CCSVI treatment want to have it, at this stage in the discovery process? In Canada there has been good coverage so pwMS are likely to have heard about it.
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby Hooch » Sun Sep 25, 2011 2:12 pm

Cece, I don't think that doctors and technicians are nearly ready to treat and diagnose CCSVI in Canada yet. Unfortunately the delay in acceptance to the procedure means that even in the vascular field there has been little talk about it. My son is a medical student and he gives me the impression that this is the case.
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby CD » Sun Sep 25, 2011 3:31 pm

This is a double blind clinical trial, with an arm. It is also a half treated with the real CCSVI angioplasty, and a half sham treatment. (placebo)
All must have a US Doppler or MRI/MRV proof of meeting CCSVI criteria prior.

I think they have to return for a few follow-ups unless the US Doppler will be in Canada. They required me to have a 3, 6, 9 and 12 month US Doppler in Albany, NY. I believe it could be more local if I called and could not make it for one of those visits, and consultations with the Dr.

But with a DB trial, they have to make sure that the trial co-coordinators, IR's and Neurologists get all the i's dotted and t's crossed. It takes time to set up a clinical trial, even for drugs, let alone a procedure.

There will be many QOL questionnaires. I did many now, and I was not in a trial. It is a lengthily booklet. A little on the order of how Dr Timothy Vollmer (sp?) did his 6 month questionnaires on MS. I did them for 10 years =boring. Lol You know those, "In the last 4 weeks, how was this______? type of questions.

FYI: At my first CCSVI procedure, at Albany Hospital (yes), while on the table before they started, the resident doctor asked out loud if I were the sham or true procedure? WHAT!!!! 8O 8O 8O I think she sent my bp monitor flying upward. He yelled, NO! this is a true case not part of any trial. Whew! I sure wanted some drugs after that scare, yet little drugs are given. :sad:
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby Cece » Thu Jan 12, 2012 1:56 pm

www.prairiepost.com/news/sw-sask-news/h ... tient.html

Lots of great information! The trial is in its final stages of obtaining FDA approval. Saskatchewan MS patients can now apply to be part of the trial. It's a two year, double-blind clinical trial. This is the largest double-blind clinical trial to date. It will include 86 patients from Saskatchewan, which I believe is in addition to the US patients in the same trial. If it's double-blind, some of those patients will not be getting the procedure done. Two years is a long time to wait to find out if you had it done or not.

Patients will be randomly selected, then screened for eligibility and medically assessed, with the first Saskatchewan patients being treated in March.
"Our research team is ready to accept patients and begin gathering data," vascular and interventional radiologist who is leading the Albany research team Dr. Siskin said. "Patients will need to understand that half of those participating will have the angioplasty procedure and half will not. As a result, this research will give us sound, scientific evidence upon which we can base decisions about the role of treating CCSVI in patients with MS."

This is exciting and I wish the best for all participants and researchers!
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby Cece » Fri Feb 03, 2012 3:37 pm

According to this
http://cjme.com/story/sask-ms-patient-h ... york/42159
they have received 550 applications thus far. Applications will continue to be accepted until Feb 24th.
You can apply online here: http://www.health.gov.sk.ca/ms-clinical-trial
and here are the eligibility criteria:
What are the eligibility criteria?
To be considered for the study, volunteers must:
•be between the ages of 18 and 60
•be a resident of Saskatchewan
•agree to comply with the research protocols
•be able to travel between Canada and the United States
•not be pregnant, or planning to become pregnant within six months of entering the research study
•not had any changes in their drug regimen for MS in the six months prior to entering the research study
•not have a known allergy to nickel, iodine or gadolinium-based contrast agents which cannot be adequately pre-medicated

If anyone from TiMS applies for this, and especially if you get accepted, post and let us know!

This struck me as relevant info too:
Will it cost patients anything to participate?
No. The Saskatchewan government has made a commitment to pay for patient travel expenses related to the research.

Will patients be able to take someone with them to Albany?
Each patient will be able to take one support person. Airfare will be covered for a support person accompanying a patient. One hotel room will be covered per patient. A support person could arrange an additional hotel room at their own expense.
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Re: SASKATCHEWAN ENTERING PARTNERSHIP TO ADVANCE MS RESEARCH

Postby KateCW » Fri Feb 03, 2012 6:27 pm

I am quite proud of my home province for doing this. I think it makes financial sense to send people to participate in trials, for all diseases, not just MS.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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