Sarcoidosis Registry

priscurl
6 Recommendations

I don't know if others have seen this, and whether it is Kosher.

Dr Om Sharma is supposed to be on the board of it.

It is basically a survey of people with sarcoidosis.

It is a welcome attempt to allow patients to speak about how the disease affects them so that the medicos' information, symptomology and statistics regarding the disease can be corrected and augmented.

If it is the real McCoy, we all should have our say and see if they can re-direct research to where it is needed.

Apparently the medical community is becoming aware that what they say about the disease and how patients' suffer it are two different things

It can be found here
http://www.snaregistry.org/

Pris

26 replies

Cheesypops

Dr. Gopal Allada is my pulmonologist. Have not seen him yet. But he is listed on that site.

It appears to be one from my "area" of the Northwest USA. So I will be doing some...checking on it today. It looks interesting.

gonenatural

I filled out the form but be ready, it took me 2 hours.

I do think we should fill out the form, donations are an option. Your information is to be confidential unless you state otherwise.

Thank You,
Gone Natural

Ibeam

It took a log time to fill out this form and when I sent it all I got back was incorrect form submission.. Where did my info. go? I put a lot of personal detailed info. on there and was excited to help in clinical trials. Is this for real? ???- we are sarcoidosis patients and we are use to the ups and downs, mainly the downs. This is just another exasperating experience. Is this info. in the wrong hands ?? Can some one explain.

priscurl

That would be great!

Thanks Cheesypops.

priscurl

Hi ibeam,

Perhaps you accidently missed filling out some of the questions.
I found I had to go back over the stuff often because I left stuff blank accidently. It was hard to control where you were up to. I double checked I had filled in all the spaces before I posted and it went through fine.

Krissy

Thank you for this information. I have notebooked it so that when I have more time I can fill it in. We need to share as much information as possible. It is amazing. I had not read this when I started my discussion on Sarcoidosis only being diagnosed after lung involvement.
I hope a lot of people do this.

cammy678

I WAS READY TO FILL IN MY INFORMATION ON THE REGISTRY BUT I WILL NEED TO MAKE SURE I HAVE WHAT I NEED .I WONDER HOW MUCH I SHOULD PUT ON IT . IS THIS REALLY A GOOD WAY TO GET INFORMATION?

sherryberry

Maybe someone could check them out with the b.b.b. Maybe they will know something.

priscurl

Excuse my ignorance Sherryberry - what's the b.b.b???

kooks

I tried the b.b.b but i didn't have any luck.
It stands for Better Buisness Bureau
we need more information to go by

priscurl

I don't think the registry is actually a business in the business of making money. They are more a charity. And it doesn't cost to register.

Pris

Beauty

when i was dx in august 2008, kristi anderson (director) has been so kind and willing to answer any questions i may have. she even gave me a list of questions to ask my doctor. they meet the last saturday of every 3rd month (i think i have that right) in Portland, Oregon.

priscurl

So Beauty, are you saying this register is the real, kosher, all-above-board thing??

Beauty

morning... i have sent an email to kristi to make sure that this is infact her group. i will post what she says. then we will know if it is the real kosher thing.

have a great labor day all.

priscurl

Thanks Beauty.
If it is Kosher, we all need to fill that form in so that the doctors know there is a huge gap between what they see as remission and disease activity etc. There is also a huge gap in what patient's see as disease and what doctors do on paper.

Pris

kooks

Hi Pris,
I would love to fill out the form it would make a huge difference i emailed Jan on the on the FSR Group and had told them if they can revise the statics form.
Please let me know if it's all good!

Connie

kooks

Sorry meant Statistics Facts

priscurl

What's wrong with the statistics?
Pris

ncwoolgatherer

Are there stats available on this site? I put in a search and didn't find much.

Cheesypops

sorry havent followed through with phone calls as of yet. Did try a backdoor "super secret top level why I dont know" search for some of the finacials of the site through a link

Dead end..I tend to get a tad bit carried away at times it appears..:p

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