I did a quick search on this on the discussion boards but nothing came up so pardon me if anyone's ever posted something like this in the past.
Has anyone here ever participated or considered participating in a clinical study or trial before? If so, what study/trial and why? What was the outcome (if known)? Would you recommend it to others or are you against it?
I live in the Washington DC area (MD suburbs) close to the National Institute of Health and it looks like they're actively recruiting Chiarians for several studies. I'm considering signing up for one for several reasons:
- I've participated in some of NIH's community outreach events before when I didn't have all of these conditions just out of curiosity and to learn more. But a lot of those community events have since been cut due to sequestration. I guess one could say I'm looking to fill that void?
- It'll be interesting to learn as the researchers learn
- I like to see it as me contributing to the greater cause of understanding more about this rare disease
If anyone else is interested, here are more details about the studies:
- A Prospective Natural History Study of Patients With Syringomyelia http://www.clinicaltrials.gov/ct2/show/NCT01150708 (looking for 18+ w/SM OR Chiari I w/o SM)
- Genetic Analysis of the Chiari I Malformation. "to better understand the genetic factors related to the Chiari I malformation."http://www.clinicaltrials.gov/ct2/show/NCT00004738?term=chiari&rank=3
- The Genetics of Chiari Type I Malformation (similar title, but conducted by a different group. Same purpose - to research if there's a genetic connection) http://www.clinicaltrials.gov/ct2/show/NCT01060800?term=chiari&rank=1
All of the studies are looking for only type 1 participants though.