NORD OT RESEARCH HAS BEEN ANNOUNCED!!
Posted: Thu Jun 14, 2012 5:37 pm
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.
Peggy
.................................................................
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.
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.
Peggy
.................................................................
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.