Let
Me Introduce You…
Me Introduce You…
By Cherie C. Binns RN BS MSCN for MSCN and ACP
July 13, 2014
Last summer I was contacted about my knowledge of
Multiple Sclerosis and the research process in that field. I coordinated a couple of small clinical
trials locally and know the basics of the research process. For instance, I know that to bring a new treatment
for MS to market, there is an average of fifteen (15) years of intensive
research and almost one BILLION dollars spent before the FDA is ready to look
at the data presented and approve the treatment or medication to be used in the
Multiple Sclerosis Population (or cancer or diabetes or heart disease or any
number of other illness families).
Multiple Sclerosis and the research process in that field. I coordinated a couple of small clinical
trials locally and know the basics of the research process. For instance, I know that to bring a new treatment
for MS to market, there is an average of fifteen (15) years of intensive
research and almost one BILLION dollars spent before the FDA is ready to look
at the data presented and approve the treatment or medication to be used in the
Multiple Sclerosis Population (or cancer or diabetes or heart disease or any
number of other illness families).
The call I received was generated by a small but
dedicated group of people who have been working together for nearly a decade at
the Accelerated Cure Project (ACP). The goal of this group, as I understood it
then, was to gather health information and biological samples (blood) that
could be shared with researchers to lower the cost of the research, standardize
research (same information used by many can eliminate what we call “outliers”
or information that is just sitting out there and no one quite knows what to do
with it) in exchange for the results of their findings. It is thought this may shave a few years off
the research process and lower the cost of bringing new treatments to market.
dedicated group of people who have been working together for nearly a decade at
the Accelerated Cure Project (ACP). The goal of this group, as I understood it
then, was to gather health information and biological samples (blood) that
could be shared with researchers to lower the cost of the research, standardize
research (same information used by many can eliminate what we call “outliers”
or information that is just sitting out there and no one quite knows what to do
with it) in exchange for the results of their findings. It is thought this may shave a few years off
the research process and lower the cost of bringing new treatments to market.
That phone call last summer was being made many
times over to people who were not only familiar with the research process, but
with membership drives, and Not for Profit Governance and more. Uniquely, at least half of the people chosen
to be contacted were persons living with Multiple Sclerosis! (PWMS) They were in the infancy of forming iConquerMS,
a Patient Powered Research
Network (PPRN), to see that the kinds of research that those of us living with
MS were most concerned was being done…and quickly! The goal is to communicate with researchers
to let them know what “we, the people” feel is most urgent and most important
right here and right now! Once our
Governance, Membership and Research committees were formed, we began to
brainstorm in conference calls to find ways how we would get the news out to
the MS Community that they could have a voice and their information had
power to drive research and their ideas could become actual research
projects.
times over to people who were not only familiar with the research process, but
with membership drives, and Not for Profit Governance and more. Uniquely, at least half of the people chosen
to be contacted were persons living with Multiple Sclerosis! (PWMS) They were in the infancy of forming iConquerMS,
a Patient Powered Research
Network (PPRN), to see that the kinds of research that those of us living with
MS were most concerned was being done…and quickly! The goal is to communicate with researchers
to let them know what “we, the people” feel is most urgent and most important
right here and right now! Once our
Governance, Membership and Research committees were formed, we began to
brainstorm in conference calls to find ways how we would get the news out to
the MS Community that they could have a voice and their information had
power to drive research and their ideas could become actual research
projects.
iConquerMS
uses surveys similar to some you may have done
through NARCOMS and it also gives people a place to offer research suggestions,
share their health record data,
volunteer and in general, have personal
input and, at times, control over the outcomes and time lines and costs of
research. We also hope to partner with NARCOMS in the future to share and
augment each other’s data toward a better understanding. You still have the opportunity every Spring
and Fall to continue your participation in NARCOMS and add new understanding
through iConquerMS.org. iConquerMS.org Plans to roll out our
surveys in the Summer and Winter so you don’t feel overwhelmed with the help
you are asked to give to both groups.
uses surveys similar to some you may have done
through NARCOMS and it also gives people a place to offer research suggestions,
share their health record data,
volunteer and in general, have personal
input and, at times, control over the outcomes and time lines and costs of
research. We also hope to partner with NARCOMS in the future to share and
augment each other’s data toward a better understanding. You still have the opportunity every Spring
and Fall to continue your participation in NARCOMS and add new understanding
through iConquerMS.org. iConquerMS.org Plans to roll out our
surveys in the Summer and Winter so you don’t feel overwhelmed with the help
you are asked to give to both groups.
At the beginning of this year, we launched a
monumental campaign with a goal to bring our membership to 20,000 persons with
MS by the beginning of 2016. We are
doing well but could use some more help.
Persons with MS (PWMS) are needed to log in, set up a free account,
share their story and data and recruit family and friends to do the same. Why family and friends? We also want to further look at the role
genetics or the environment may have in who gets MS Additionally. You have the opportunity to help researchers
in other fields of medicine as iConquerMS
has banded together with 17 other PPRNs around the country through PCORI
(Patient Centered Outcomes Research Institute), which serves as an umbrella
organization for patient powered research. Our data is protected through
de-identification methods, before it is shared with researchers.
monumental campaign with a goal to bring our membership to 20,000 persons with
MS by the beginning of 2016. We are
doing well but could use some more help.
Persons with MS (PWMS) are needed to log in, set up a free account,
share their story and data and recruit family and friends to do the same. Why family and friends? We also want to further look at the role
genetics or the environment may have in who gets MS Additionally. You have the opportunity to help researchers
in other fields of medicine as iConquerMS
has banded together with 17 other PPRNs around the country through PCORI
(Patient Centered Outcomes Research Institute), which serves as an umbrella
organization for patient powered research. Our data is protected through
de-identification methods, before it is shared with researchers.
We are excited that some of the early research
findings are coming back to us showing similar findings when the same data is
used.
findings are coming back to us showing similar findings when the same data is
used.
Please take some time to go to www.iConquerMS.org
, become a member, contribute your data and information, be an active
participant in the research process and in so doing, be a self-advocate for a
Healthier YOU! There is a place on the
website to reach out to the Governing Board Members with questions about why we
choose to do what we are doing and how we are doing it. Or you can check out who serves on the
various committees and reach out to us with your questions. Finally, those of us who live with Multiple
Sclerosis have a strong voice and a say in what we want to see studied and can
move the course of research forward with our individual contributions to iConquerMS.
, become a member, contribute your data and information, be an active
participant in the research process and in so doing, be a self-advocate for a
Healthier YOU! There is a place on the
website to reach out to the Governing Board Members with questions about why we
choose to do what we are doing and how we are doing it. Or you can check out who serves on the
various committees and reach out to us with your questions. Finally, those of us who live with Multiple
Sclerosis have a strong voice and a say in what we want to see studied and can
move the course of research forward with our individual contributions to iConquerMS.
The above information was provided to MS Views and News by Cherie C. Binns RN BS MSCN
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
.===================================
Visit our MS Learning Channel on YouTube: http://www.youtube.com/msviewsandnews