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How YOU can contribute to MS research
I thought of this after Lulu's post about joining the Accelerated Cure Project's repository project and thought maybe some of you might be interested. There are a few ways that the average person with MS can contribute to MS research without the risks and commitment of a clinical trial. The ones I know about are:
1. NARCOMS registry (North American Research Committee on Multiple Sclerosis, a project of the Consortium of Multiple Sclerosis Centers, http://www.cmscnarcoms.org/). They run a Global Patient Registry in order to "facilitate multi-center research in the field of multiple sclerosis." They currently have "an active database of over 34,000 individuals who have MS."
If you sign up, all you have to do to participate is fill out a survey every six months. You can do this online or via the mail. They email you when it's time to fill out the form. The online form can be a little clunky, but it's not too hard or time-consuming. It just asks questions about your current condition and recent history as well as some question on whatever the theme of the current survey is.
They say the benefits of participating are:
* You are helping to provide the information needed to learn about the variations of MS in a very large group of patients and to monitor the progression of the disease
* You help us monitor the effects of various treatments. Your information may be providing ideas for future research
* You will receive the printed version of the MSQR free of charge
* You will be informed of recent studies and their results
* You will be notified of clinical trials in which you may be eligible to participate
2. PatientsLikeMe (http://www.patientslikeme.com/) was inspired by the needs of patients with ALS. Their "goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, [they]'ve created a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits."
PLM has a forum, like we do, but it's really large and has a high noise-to-signal ratio (lots of off-topic stuff) so I find it hard to read. However, because it's such a large forum, there are a lot of posts on all sorts of topics so it can be a useful place to research things.
What they also have are some fairly comprehensive tracking tools. You can track the history of your MS--what symptoms, when they were, how bad they were, what treatments, how much, how long, and why, relapses, and so forth.
They have a lot of members (about 13,000 people with MS) and are good at prodding people to keep their data up-to-date so I imagine they have a pretty large pool of self-reported data. They want to use this to further research. They have a good blog post on this at:
http://blog.patientslikeme.com/2008/12/15/structuring-and-presenting-the-patients-perspective-at-amia/
where they talk about the potential of their "repository of structured outcome data." Also, although not rigorous, randomized, double blind trials, the experiences of people trying new approaches can be combined to create "coordinated patient-led research" that may lead to new insights.
The strength of this site is the amount of structured data they have. A while back, I read a book called Supercrunchers, which talked about the potential for mathematical analysis of large data sets to be more accurate than experts and to produce new insights. So if you're at all inclined, I'd encourage you to sign up and contribute your own data point in case someone can figure out the patterns.
Finally, if you're a little more ambitious, you might consider joining the Accelerated Cure Project's repository (http://www.acceleratedcure.org). Since no one knows exactly what causes MS and they think it might be easier to find a cure if we knew a little more about how MS works, they are trying to create a repository of data and blood samples that researchers can use to try to figure this out. After six years of the frustration of an idiopathic (we-have-no-idea-what's-causing your problem) peripheral neuropathy dx, this goal of figuring out the cause of MS really resonates with me. It's hard to fix a problem (except randomly) if you don't know what's causing it.
As Lulu said, check out the Accelerated Cure Project website to see if there's a center near you. It sounds like it's just a lot of blood and a very detailed history. They'd also like to periodically follow up with you over time and want to recruit some of your blood relatives to be controls.
If anyone knows about any other research-related opportunities, please speak up.
Some day I'll learn to write a short post...
sho
1. NARCOMS registry (North American Research Committee on Multiple Sclerosis, a project of the Consortium of Multiple Sclerosis Centers, http://www.cmscnarcoms.org/). They run a Global Patient Registry in order to "facilitate multi-center research in the field of multiple sclerosis." They currently have "an active database of over 34,000 individuals who have MS."
If you sign up, all you have to do to participate is fill out a survey every six months. You can do this online or via the mail. They email you when it's time to fill out the form. The online form can be a little clunky, but it's not too hard or time-consuming. It just asks questions about your current condition and recent history as well as some question on whatever the theme of the current survey is.
They say the benefits of participating are:
* You are helping to provide the information needed to learn about the variations of MS in a very large group of patients and to monitor the progression of the disease
* You help us monitor the effects of various treatments. Your information may be providing ideas for future research
* You will receive the printed version of the MSQR free of charge
* You will be informed of recent studies and their results
* You will be notified of clinical trials in which you may be eligible to participate
2. PatientsLikeMe (http://www.patientslikeme.com/) was inspired by the needs of patients with ALS. Their "goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, [they]'ve created a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits."
PLM has a forum, like we do, but it's really large and has a high noise-to-signal ratio (lots of off-topic stuff) so I find it hard to read. However, because it's such a large forum, there are a lot of posts on all sorts of topics so it can be a useful place to research things.
What they also have are some fairly comprehensive tracking tools. You can track the history of your MS--what symptoms, when they were, how bad they were, what treatments, how much, how long, and why, relapses, and so forth.
They have a lot of members (about 13,000 people with MS) and are good at prodding people to keep their data up-to-date so I imagine they have a pretty large pool of self-reported data. They want to use this to further research. They have a good blog post on this at:
http://blog.patientslikeme.com/2008/12/15/structuring-and-presenting-the-patients-perspective-at-amia/
where they talk about the potential of their "repository of structured outcome data." Also, although not rigorous, randomized, double blind trials, the experiences of people trying new approaches can be combined to create "coordinated patient-led research" that may lead to new insights.
The strength of this site is the amount of structured data they have. A while back, I read a book called Supercrunchers, which talked about the potential for mathematical analysis of large data sets to be more accurate than experts and to produce new insights. So if you're at all inclined, I'd encourage you to sign up and contribute your own data point in case someone can figure out the patterns.
Finally, if you're a little more ambitious, you might consider joining the Accelerated Cure Project's repository (http://www.acceleratedcure.org). Since no one knows exactly what causes MS and they think it might be easier to find a cure if we knew a little more about how MS works, they are trying to create a repository of data and blood samples that researchers can use to try to figure this out. After six years of the frustration of an idiopathic (we-have-no-idea-what's-causing your problem) peripheral neuropathy dx, this goal of figuring out the cause of MS really resonates with me. It's hard to fix a problem (except randomly) if you don't know what's causing it.
As Lulu said, check out the Accelerated Cure Project website to see if there's a center near you. It sounds like it's just a lot of blood and a very detailed history. They'd also like to periodically follow up with you over time and want to recruit some of your blood relatives to be controls.
If anyone knows about any other research-related opportunities, please speak up.
Some day I'll learn to write a short post...
sho
Bumping again to update with a couple interesting articles related to this topic:
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1320 talks about how the University of Colorado Denver has become the latest partner in the Accelerated Cure Project which collects blood and data from people with MS and other neurological diseases, as well as normal controls.
"Researchers around the globe can apply to study the blood samples as well as have access to 89-page questionnaires that detail patients' heritage, health history, lifestyle choices and exposure to everything from paint thinners to hair products and ammunition.
"The hope is to determine the combination of genetic and environmental factors that puts a person at risk for multiple sclerosis, and perhaps find a way to predict and cure the disease."
http://www.unitedspinal.org/msscene/2009/08/13/narcoms-report-registry-status-in-spring-2009/ is an update on the NARCOMS registry.
"From a research point of view, the current state of the Registry already provides large sample sizes for cross-sectional analyses, an expanding true longitudinal cohort in the thousands, an extensive range of variables, and a reasonable level of racial, ethnic, and geographic diversity in its population."
sho
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1320 talks about how the University of Colorado Denver has become the latest partner in the Accelerated Cure Project which collects blood and data from people with MS and other neurological diseases, as well as normal controls.
"Researchers around the globe can apply to study the blood samples as well as have access to 89-page questionnaires that detail patients' heritage, health history, lifestyle choices and exposure to everything from paint thinners to hair products and ammunition.
"The hope is to determine the combination of genetic and environmental factors that puts a person at risk for multiple sclerosis, and perhaps find a way to predict and cure the disease."
http://www.unitedspinal.org/msscene/2009/08/13/narcoms-report-registry-status-in-spring-2009/ is an update on the NARCOMS registry.
"From a research point of view, the current state of the Registry already provides large sample sizes for cross-sectional analyses, an expanding true longitudinal cohort in the thousands, an extensive range of variables, and a reasonable level of racial, ethnic, and geographic diversity in its population."
sho
Thanks sho for that bump - this is important to share. I am taking my sisters to the clinic tomorrow for their control interviews for the accelerated cure project. I can give a complete update on the project after this.
I would also encourage everyone to register through NARCOMS - it takes so little time to enter your data and could be so beneficial in so many ways.
be well, be active
Lulu
I would also encourage everyone to register through NARCOMS - it takes so little time to enter your data and could be so beneficial in so many ways.
be well, be active
Lulu
Bump--just wanted to make sure people see this because I think it's important.
To summarize:
NARCOMS http://www.cmscnarcoms.org/ click on Enroll in blue bar at top to enroll
PatientsLikeMe http://www.patientslikeme.com/ fill out history, symptoms, medications and other treatments
Accelerated Cure Project Repository http://www.acceleratedcure.org/repository/
sho
To summarize:
NARCOMS http://www.cmscnarcoms.org/ click on Enroll in blue bar at top to enroll
PatientsLikeMe http://www.patientslikeme.com/ fill out history, symptoms, medications and other treatments
Accelerated Cure Project Repository http://www.acceleratedcure.org/repository/
sho
Sho - great addition ---- I hope our community is spurred on to join in somehow, someway!
L
L
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