I would like to know if any SCD member of this site has ever participated in a SCD clinical trial. If so, what was the trial; what phase was the trial in, and what was your experience. Also, if you have never participated or inquired about a clinical trial, the please share your reason(s) why?

I ask this question because I have a baby girl due in Nov. and my husband and I found out during my 5th month that she will have SCD. I’ll have to post a blog about that whole ordeal some other time. Anywho, in addition to crying buckets of tears and worrying, I chose to arm myself with information about the disorder as well as current and potential/treatments.

For those of you who are interested, I have posted a link of SCD clinical trails that are being conducted across the US and in other countries. If you are not interested in participating, I do encourage you to at least check out the link to see what treatments are being tested and might be coming down the pike. I especially encourage the parents of young children with SCD to do research on Hematopoietic Cell Transplant (SCURT, SALT Projects) that maybe coming down the pike. It’s in the early testing phase, but it looks very promising. I have posted some helpful links below as well.

http://clinicaltrials.gov/ct2/results?term=Sickle+Cell+Anemia&recr=Open&pg=1

http://www.chp.edu/CHP/bmt

http://www.marrow.org/PATIENT/Undrstnd_Disease_Treat/Undrstnd_Treat_Opt/Lrn_BMT_Cord/Advances_in_Tx/index.html# (this link has lots of good information)