Moderator: gloria

Hello everyone,
We finally have details from NORD as to our research. I will fill you in on the details prior to the final announcement. I received an email from NORD saying that there was a tie between 2 Proposals sent in. I am assuming they use a point system to evaluate each proposal. They said that we could decide how we wanted to handle it and our choices were:

-We could use all of our total money we have (that would include $35,000.00 we have in our initial fund and $5,000.00 we have now in our second fund we had started) for a total of $40,000. 00 and give it all to one of the researchers or split the money in half and give half to each researcher.

-We could use only the money in our first fund - $35,000.00 and give it all to one researcher or split it into two and not touch our second fund.

I asked if we could have more details ie. If participants were needed and location as I was worried that maybe there wouldn’t be enough participants – depending on location.

They replied that both researchers were not in the U.S. or Canada and that both researchers have between 30-40 OT people to draw on. The also indicated that both researchers were doing different types of research – both non-invasive.

Gloria and I wanted to involve Pat and Helen in the decision on this, as they both have been active in our OT group, and we all agreed that we would split the total $40,000.00 between the two researchers. We felt that in terms of research even $40,000.00 is not a large sum of money and that with splitting it between the two, we would raise awareness and we also liked the idea that they both had different approaches. NORD did not give any more details at the time as to the research. Once the decision is made, we were told we would get more details. We also had to wait to see if the researchers would accept our decision.

I am copying exactly the email I received from NORD so you know what I know. I will say also, that I am asking NORD for a few more details and will update you when I receive this information.

I am also asking them if they would ask each of the researchers if the researchers would like to put their contact information on our website in case they need more participants and then if they do, any OT person interested in getting involved could contact them directly. I will let you know what they say about that.

Dear Peggy,

Finally, all is in order, so here are your two researchers, their institutions, titles of their studies, and a brief description of their proposals (two one-year awards of $20,182 each). Please feel free to post this on your website and to share it with anyone whom you feel would be interested:

1) Sabine Meunier, MD, PhD
Neurologist, Senior Researcher
Movement Disorders Clinic, Pitié-Salpêtrié Hospital
Paris, France

Title of Study: Is Cerebellum a Potential Therapeutic Target for Primary Orthostatic Tremor (POT)?

The pathogenesis of POT is unknown but the condition is believed to originate in or near the brainstem. Dr. Meunier's proposal describes how the lives of these patients are severely altered, how thus far, medications have limited efficacy, and invasive surgical procedures, including deep-brain stimulation, have not been successful. This will be a pilot study using the non-invasive technique of repetitive transmagnetic therapy (rTMS) focused on the cerebellum. Dr. Meunier and her group have had success with rTMS in a few of their POT patients, and will now formally conduct this pilot study.
(A "pilot study" is a smaller version of a larger clinical study. They are performed to ensure that the ideas or methods behind a research idea are sound, as well as to “work out the kinks” in a study protocol before attempting to launch a larger study.)
Dr. Meunier, together with her colleague, Professor Marie Vidailhet (Head of the Movement Disorders Clinic, Pitié-Salpêtrié Hospital), will combine their resources to perform this pilot study. Dr. Vidailhet has been following approximately 30 POT patients for several years.

2) Julian Rodrigues, MBBS, FRACP
Australian Neuromuscular Research Institute
Perth, Western Australia

Title of Study: Pregabalin for the Treatment of Primary Orthostatic Tremor

The primary investigator for this study, Dr. Rodgrigues, has a large cohort (30-40 patients) of POT patients. He has switched some of his POT patients to pregabalin (from gabapentin), with reports of much better symptom control, lower dosing and better patient compliance. This study will further review the efficacy of pregabalin in POT patients.
Dr. Rodgrigues has done specific research on POT and has published (co-authored) papers on POT in highly-reputable medical journals. The expected patient study size for this project is 30-40 patients. Dr. Rodgrigues and his colleagues have been following a cohort of 20 OT patients, but believe they will be able to recruit 30-40 patients for this medication study.
Dr. Rodrigues will have the benefit of co-investigators, including his institution's chairman of their movement disorders clinic, chairman of the physiotherapy department, and director of the institute's "head and brain" research section.
By gloria
Thank you so much for your sincere and compassionate part in working with NORD so we as a group of OT people now have our first two research studies from our donations through NORD. The importance of continued donating to our fund remains a “ work in progress” for more research in our future.

Peggy you have dedicated so much of your time and help which has brought us to this point in time and we are sincerely grateful to you.

Thanks always,
By Betty

I would like to join Gloria in thanking you for all your hard work and continued dedicaion to our cause with NORD. You have worked tirelessly; and continue to do so.

Again, thank you for all you have done, and continue to do.

By stella R
Hello everyone.
This is very exciting news.
Thanks so very much to Gloria ,Jeff,Peggy and all who have worked so hard
on this research program.
I will print out this letter from Nord and take a copy to my Neurogolist
on my next visit.
Take care all
By gloria
Dear Stefanie and the entire NORD Organization:

All the members of the website OT RESOURCE wish to send our sincere thanks for being there for us when it was time to find a way to establish funding for research. Orthostatic Tremor like all rare disabling disorders need help and guidance to find research that might brighten our future and NORD provided all of that. Now with two research programs in place our hopes are encouraged and we will continue to build our funding for continued future research until we find better medication, treatment or possibly the ultimate wish a cure.

With sincere gratitude,

Gloria Nelson MacWright
By jolarson
This is the news we have all been waiting to hear. Thanks to Gloria and everyone on this site who have contributed so much information and also donations. Very exciting news! We all have to continue to spread the word about this disease and hopefully the doctors who will do the research will give us all some answers.
By magnbud
This is exciting news and I thank all who have worked so very hard to make this research possible.Lets hope they come up with some new insights into our disorder.
Maggie Neal
By Sueb
Great news that one of the two research grants is for Dr Julian Rodrigues, who is here in my home town of Perth, Western Australia. My neurologist has already referred me to him to be part of his research, so this is very exciting.
I am also very pleased about the other research group in Paris, as two of my very dear young French neurologist friends work there, I think!! I will check with them.
By Betty
It is wonderful news to know two research grants have been issued. It is also exciting to know you have been referred to Dr. Julian Rodrigues to be part of his research. We will all be waiting to hear how things go and what we might expect.

Do keep us informed Sueb!

Hello everyone,
I had sent in the following question to NORD and have copied their response so you know what I know once again. They seem to be very attentive and diligent about their responsibilities so that is great. If I hear anymore I will let you know.
(Q) "I recall that initially you mentioned that once the researchers have been decided upon you only send them a “start-up amount of funding” and receive reports. Could you please provide me with a brief outline of what happens in this regards. Also, will we be getting any interim feedback from you or do we wait until the end of the research to receive a report? We would like details on this if possible."

(A) The researchers are each beginning the process of obtaining and sending their required documents to NORD. Aside from their contract with NORD (a very simple, straight-forward document that both the principal investigator and an official grants officer from the institution must sign), there are two very important documents that can take some time -- possibly a few months --
obtaining their institution's Ethics Committee approval and Patient Consent forms.

Because both studies involve "human subjects," each researcher must provide to NORD an authorized, stamped copy of their institution's Ethics Committee approval (called an IRB Committee in the US -- "Institutional Review Board"). The purpose of these committees is to review all studies to make sure that the rights of the patients are being protected, and that the study reveals no unnecessary risks.

They also must provide a copy of the patient consent form (this form is also approved by the institution's Ethics Committee).
Hospital Ethics Committees meet sporadically, and since summer is approaching, there truly might be a few months delay. (However, in Australia where Dr. Rodgrigues and his group are located, winter is approaching, so it's anyone's guess about the timing there.)
In addition, Dr. Meunier's documents will likely be in French (she is fluent in English, just FYI). Our contract stipulates that (1) the original French documents be provided, (2) English translations be provided, and (3) a signed note from an institutional officer -- attesting to the accuracy of the translations -- be provided.

I have no concerns, whatsoever, about both researchers successfully obtaining these documents. There should be no problematic issues for the Ethics Committees.

NO MONEY will be disbursed until all required documents are received by NORD.

The first payment to start to study is generally $12,000. Six months after the study begins, an interim progress report (in English) must be sent by the researcher (we have a required format for this) and an authorized, signed financial report (in US dollars) must also sent at the same time.
NORD's Medical Advisory Committee (MAC) will review the interim progress reports for detail, etc. If approved, an interim payment is made -- if more than the first $12,000 has been spent.

Six months later, the study ideally will have been completed. A final progress report and financial report are required withing 60 days of completion of the study. The balance of the funds are then disbursed (if the financial report shows that the balance has been used appropriately).

NORD's required progress report form has a brief section to be written "for the public." This is where the researcher provides input on the progress of the study, knowing that patient groups and anyone with Internet access may post this section publicly. While these studies are considered confidential until the researcher produces a published manuscript, they also know that they must provide some specific information so that donors and other interested patients can obtain some feedback. They are HAPPY to do this. I will send you these sections of the reports, and you will be able to post them on your website. You'll be receiving a total of two progress reports from each researcher.

Sometimes the researchers write too vaguely in the public section (on purpose, so that other researchers are not gleaning confidential material). When this happens, I ask them to please be a bit more specific, as the progress of these studies is so important for everyone. They always comply without ever balking. :-)

As an aside, these schedules often do not go like clock work. There are sometimes unavoidable delays -- a researcher loses a lab tech and needs to find another one -- one of our researchers actually lost a child in a car accident during a study -- it was horrific!!

So, there is the planned schedule, but there are also the unavoidable delays. Each delay must be documented and accounted for, and then approved by NORD's MAC.

Peggy -- feel free to share any or all of the above with your group, post it, etc
By Betty

Thank you for the update. I have printed it and have it in my NORD file. I hope everyone will continue to donate to this very important funding. I know you will keep us posted as you receive them.

Again, thank you, and all those who have worked with you, to get us to this point.

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