FAQ/Help |
Calendar |
Search |
Today's Posts |
12-22-2009, 10:27 PM | #11 | |||
|
||||
Senior Member
|
pnschmidt said
"We're piloting the project right now. The phase-I protocol was developed before I joined the foundation, and it did not include patient involvement in the study design. Still, much of the data is patient-reported, and so no one can succeed without engaging the patients (and caregivers) as stakeholders. Going forward, I have experience with projects at Kaiser Permanente where we launched several disease management protocols where patient input was integrated throughout the process, and I hope to bring that model to this project. Also, I've been involved in the Health 2.0 conferences and the participatory medicine group (led by e-Patient Dave) and am leveraging that experience in thinking about study designs. Perhaps we can accelerate this by including participatory medicine in our next research funding opportunity." Most excellent and very exciting! Your previous involvement with Health 2.0 and e-patients.net is good news for patients; I'm inclined to think you "get it" - a great asset for NPF and this project - I hope you will continue the conversation with us.
__________________
Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
|||
Reply With Quote |
12-22-2009, 10:50 PM | #12 | |||
|
||||
Senior Member
|
I agree that too many registries will water down the effort. And thank you for pointing out the differences in those initiated (especially the info about research-acceptable registry statistics).
In case anyone wonders why the Ali Center registry didn't make it, I can tell you one major reason - it was a survey along with a registry. The patient was to complete the survey - and it was entirely too long. I forget how many pages it was, but I stopped filling out the follow-up questions because of its voluminous approach. I know that's not a good excuse, but I hope future registry information seekers keep this in mind. Peggy |
|||
Reply With Quote |
12-22-2009, 11:03 PM | #13 | |||
|
||||
Senior Member
|
Peg - sometimes I wonder if we are using the word "registry" when "database" might be more accurate. To me, a registry implies something official and mandatory while building a database of collected information is something very different. And while I agree that I wish there could be a centralized agency collecting all of the data in an official way, I'm still glad various attempts are being made - and I hope the data will be shared.
It's too bad the Ali registry failed because the survey was too long - more information is better than less. The new registry being set up in Seattle required about a 45 minute phone interview - I did it willingly - perhaps it was easier to talk while someone else wrote!
__________________
Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
|||
Reply With Quote |
12-23-2009, 09:18 AM | #14 | ||
|
|||
Member
|
I don't redcall readig anything about the Ali Parkinson's registry failing. Is there more info on this? Here's a link to their website
http://www.maprc.com/cm/content/registry.asp And they do call it a database, as Carey suggested. I recently completed an online update to my records there. It took only about a half hour (updated twice a year) and i thought all of the questions they asked were relevant. It appeaars there will be various PD registeries or databases in the future. Hopefully they will collaborate in design and data collection and they will share i nformation with one another. And with us! |
||
Reply With Quote |
12-23-2009, 01:40 PM | #15 | ||
|
|||
New Member
|
Quote:
I am very focused on care, and so I like to see therapies and outcomes collected together. In fact, we've seen that by simply asking neurologists, "did you refer a patient to a physical therapist?" rates of referrals go up. I wouldn't want to denigrate any collection of information, though. The Nebraska registry is simple, but it is quite feasible and sustainable and should generate valuable information. For example, Smeyne also presented at the World Federation of Neurology data suggesting that exercise protected animal's brains from neurotoxins. I'd be interested to see long-term data on incidence if coupled with, say, data on community initiatives to promote physical education. Perhaps there are communities in Nebraska where physical education is a priority in the schools. Perhaps there are communities that host annual distance running events. It would be interesting to see the incidence of PD in those communities contrasted with other communities that are similar. Any data collection effort offers opportunities for discovery that wouldn't exist without that data. |
||
Reply With Quote |
"Thanks for this!" says: | Conductor71 (12-25-2009) |
01-22-2010, 03:44 PM | #16 | ||
|
|||
New Member
|
I think that this thread brings up some good questions and I hope that I can clarify on the legislation currently being considered by Congress (I also hope to learn more about the NPF registry in the future!). The legislation would establish a national registry that would gather data from existing data sources. The Agency for Toxic Substances and Disease Registries (ATSDR) would look at a multitude of data sources, including, but not limited to, Medicare, Medicaid, private insurers, Department of Veterans Affairs, and existing registries, such as California’s or Nebraska’s.
The goal is to establish a national data collection system that would provide a more accurate picture of Parkinson’s within the US, including how many people have Parkinson’s disease. As I understand it, the information gathered will be used to better understand who gets Parkinson’s disease and what factors affect the disease. Scientists and researchers will be able to access the national data to hone in on areas where additional research is needed. The national registry, at a minimum, should help uncover and inform promising areas of research. This is expected to be an invaluable tool for researchers. For the most meaningful research to proceed, a comprehensive dataset would be much more valuable than a patchwork of piecemeal datasets of at best varying quality. ATSDR has been working on the development of registries of this kind for several years. Through several pilot projects for amyotrophic lateral sclerosis (ALS) and multiple sclerosis (MS), the Agency has evaluated various data collection methodologies and has established that developing useful, nationwide data systems is possible for ALS, MS, and other neurological disorders, like Parkinson’s. I hope that people will tune into the Parkinson’s Action Network Forum Webcast on February 17th to learn more about the legislation and the need for this type of national data system. The first session of the Webcast is dedicated to this topic. You can register for free and learn more** |
||
Reply With Quote |
01-22-2010, 07:32 PM | #17 | |||
|
||||
Senior Member
|
A registry (to put this simply) is a collection of information; a survey is an anaysis of information. I guess you could use them interchangably but I think they should be kept separated. You can always "survey" the names collected from the registry. (Confused yet? lol)
I say it "failed," because nobody seems to be acknowledging it other than the Ali Center. Here we have legislation to set up another one partnering with MS, and we learn that NPF is doing one, also. Here's a link to the registry at the Ali Movement Disorder Clinic and an explanation of what they are doing with the information. http://www.maprc.com/cm/content/registry.asp I am not sure when it started, but it's been open registration season for at least a couple of years. When you sign in to the registry then iti becomes a part of a database. The purpose of the Registry is to facilitate the development of new therapies and healthcare services to improve the quality of life for people with PD. It will also accelerate the process of informing participants of more effective treatments. Here's what you are consenting to when you register: (from their website) Please read the following informative statements before you sign your consent:
Peg |
|||
Reply With Quote |
01-23-2010, 03:35 PM | #18 | |||
|
||||
Senior Member
|
to add to JSheridin's post above, go to this link to register for the PAN webcast: (You may recognize some people in this video)
http://www.thepanforum.org/video.html |
|||
Reply With Quote |
Reply |
|
|
Similar Threads | ||||
Thread | Forum | |||
The need for a registry | ALS | |||
Welcome to the ALS/MND Registry | ALS | |||
PD registry | Parkinson's Disease | |||
Welcome to the ALS/MND Registry | ALS |