Research

Optimistic77
0 Recommendations

I’m undergoing testing to determine if I have sarc. The last test is a biopsy. The doc's are 90% sure I have it. My heart goes out to so many people whose lives are altered by this unknown plague. With that said, I am interested in doing some research on this disease. I have a back ground in psychology and I have a passion for research. I currently hold a MSW and prior to the road of single motherhood I had ambitions of getting my Ph.D. in clinical psychology. So I call out to all of you to help direct me to anyone you might know currently doing research. Any help in this regard would be helpful. My prayers are with you.

5 replies

micheleb
  • By micheleb
  • Posted October 9, 2008 at 11:23 am

Unfortunately, there is not a lot of research being done for sarcoidosis. Its a bit of an orphan disease as its technically not an autoimmune disease because there is no known antigen. Sarc is kind of out in no mans land! Look for a member by the name of Paradox and read his journal entries, he is a doctor himself and also has sarc and has a lot of info posted.

Your best bet would probably be to contact some of the larger hospitals and see if they know of any current research being done. Here is a list of doctors know to treat sarc patients, it might be a starting point for you.
http://www.sarcoidosisonlinesites.com/dr%20database.htm#md

nancie
  • By nancie
  • Posted October 9, 2008 at 12:13 pm

Yes!
The NIH is doing studies. I am in a study program right now and they are wonderful. Contact the NIH in Maryland. Sandy is the study nurse I see. Here is her email address: macdonas@nhlbi.nih.gov
She is out of the office until the 20th, but she can probably help you. By the way, my ddoctor, Dr.Fontana is very well informed and caring. I have never had such remarkable care ever form a doctor or staff.
Nancie

micheleb
  • By micheleb
  • Posted October 9, 2008 at 12:16 pm

Nancie, can you tell us more about the study you are in? I am happy to hear that you have such a wonderful doctor!!

stephg113
  • By stephg113
  • Posted October 9, 2008 at 6:25 pm

Nancie,

I am located in Maryland and would like to know more about the study and if they are looking for more participants. Please send any info you may have...

Stephanie

shrinkingviolet

Go to clinicaltrials.gov and type in sarcoidosis. That will get you all the current studies.

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