Stuff That Works

I've been spotting Stuff That Works pop up on my social media feeds recently and decided to investigate. This website is aiming to crowd source peoples information on treatments, and claims to be able to show greater insights with more data.

I have entered my details into this website. I am one of 174 contributors at the moment, which means that we're at the "most tried treatments" stage. Right now this doesnt seem to show anything particularly surprising, with baclofen and physiotherapy being the two most common treatments shown.

Looking further down the list comes magnesium, stretching, tizanidine, exercise, gabapentin, botox and functional electrical stimulation, but each of these have fewer than 10 reports. The interesting thing is that when you click on each of these treatments most people report that they are insignificant (there are a few exceptions to this). I also note that these treatments are for the spasticity side of things and not so much for other symptoms.

Once 500 contributors is reached there becomes another level of analysis shown, which should show the effectiveness of the treatments. With more contributors they claim to be able to influence the direction of the research, which I am interested to find out more about. 

If you wish to go in and add details for yourself you can do so here: https://www.stuffthatworks.health/hereditary-spastic-paraplegia  

There is an interesting map showing contributors, but it is not clear how the map is formed. The main block for HSP overlaps at the edge of Multiple Sclerosis, although my indicator is halfway between MS and Parkinson's. Other nearby conditions include ALS, stiff person syndrome and cerebellar ataxia. If you zoom out other large conditions fairly near include restless leg syndrome and peripheral neuropathy. I quite enjoy looking around the map!

I think the drawback to this system is that it asks you to identify one treatment (or combination of treatments) which improves your condition, which means that you have to think about how to answer this! It is interesting to note that "no significant change" is shown in a neutral face when HSP is a degenerative condition, and no significant change may be an important result. At least you can go back in and edit your answers as often as you like!

Whilst they claim to be the first crowd sourced site, I note that there are already other two other similar long established sites:

Rare Connect https://www.rareconnect.org/en/community/hereditary-spastic-paraplegia with 1154 members

Patients Like Me https://www.patientslikeme.com/conditions/hereditary-spastic-paraplegia with 233 members