Rank: Advanced Member
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Joined: 4/11/2006
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I realize PLM exists for tracking treatments but what about having a database for reporting possible anomalous findings that might be associated with ALS and might suggest patterns to look into more formally? In recent weeks, for example, there have been posts on this forum which might suggest: 1) possible testicular atrophy or androgen insensitivity, 2) thick, fast growing nails (perhaps suggesting a Calcium issue) 3) bony abnormalities such as hammer toes (I reported this finding from Dr. Festoff) 4) onset around the time statin use began and maybe other things. If there was such a database, once any PALS (or CALS) reports some possibly associated finding or anomaly that might be related to their ALS, other PALS could be queried to report whether they have the finding or not. Or someone (including a researcher) could just put out a query, e.g. how many amalgam fillings did PALS have before diagnosis, and PALS could respond. PALS that are newly dx could be encouraged to think about and record as much information as possible as far as history, etc. that might be possibly relevant to their development of ALS.
Another idea would be for each PAL to have a unique website where they could post a complete profile of any and all possibly relevant information - where you've lived, diet habits, medications, family history, blood levels if known (or could be encouraged to get them) of things like Vitamin D, etc., statin use, other diseases, including autoimmune disorders, family history of other medical conditions like autoimmune disorders, etc. The two could complement one another.
PALS and researchers could collaborate on drawing up lists of possibly relevant factors to ask for input into such a database or profile. We could start a thread to do this right here, as a preliminary draft. Perhaps this could be added to the PLM site or, if not, a new site created just for this purpose. It might be good to be able to look at treatment efforts on the same site, in case patterns emerge as to subgroups that might respond to some treatments while others do not.
Apologies if such an online database already exists, but I haven't heard of one.
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Rank: Advanced Member
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Joined: 4/11/2006
Posts: 586
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So no one has any comments - pro, con or otherwise - about this idea? If such a thing already exists, please let me know.
I offer this suggestion because I have been following ALS research for decades (albeit intermittently) and this seems like something that might yield clues to move research forward. Of course, before the internet, something like this would have been much less practical, if possible at all, but why are we not taking advantage of the power of the internet to gather and track such data?
Thanks
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Rank: Advanced Member
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Joined: 11/21/2007
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I think PLM covers much of this and expansion shouldn't be very technically challenging for their web group.
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Le meilleur vin avec les meilleurs amis
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Rank: Advanced Member
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Joined: 2/9/2007
Posts: 183
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Questioner, This is the oldest one that I'm aware of: http://www.alsconnection.com/Certainly www.patientslikeme.com has the framework that could support such tracking. There are a couple of things that I've noticed over the years... - When the lithium spreadsheet was being used as an ad hoc way to track progress or lack thereof, there was no way to assure that the death of a patient was being reported. That's an ugly problem with ALS and self-reporting. - I sense that many patients are not eager to add their data to a database without the endorsement of their physicians. I agree that every PALS carries a huge treasure of information, but without some encouragement and participation from healthcare professionals, I think getting critical mass is a difficult goal. To me, an ideal model would be mandatory reporting of dx by physicians followed by the patient and perhaps a designee being able to add information to that information that the physician established. Mandatory reporting is not likely to happen in the U.S. where the AMA is advocating on behalf of physicians and their time. The U.S. ALS Registry could potentially grow to allow some self-reporting, but given the amount of time it has taken the CDC so far without a deliverable, I'm not holding my breath. My 2 cents fwtw.
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Rank: Newbie
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Joined: 2/6/2010
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Is this website even taken seriously by ALS neurologists or reserchers? I was diagnosed Thursday and my doctor did not even tell me about this forum or to do anything with my diet or to look for help on the internet.
M
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Rank: Advanced Member
Groups: Member
Joined: 6/14/2009
Posts: 777
Location: United States
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Michelle..Neurologists know nothing about ALS..They know a little about the palliative side, but nothing about treating..
Mine told me to stay off forums..
Dumbass Drs....I'd say go on a high fat diet and take with a grain of salt all treatments done by us..You just pick and choose.
But keep your weight up. Sorry you joined the ranks .Ron..7 yrs. PALS..
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