A very narrow Clinical Trial to collect IVIG Data

    • Anonymous
      January 5, 2011 at 12:01 pm

      First, the disclaimer, I neither work for nor do I plan to advertise for any particular company.

      Now, having said that, I have used the trial company, Coram. In fairness then, I have also used Accredo. Both provided at home IVIG.

      The clinical Trial details are here:

      http://clinicaltrial.gov/ct2/show/NCT01109810?type=Obsr&lead=Coram+Clinical+Trials&rank=1

      The big trick is that you cannot currently be receiving services from Coram and you can only receive services from them. Sounds self serving doesn’t it? Well, maybe some of you meet that criteria and are willing to participate.

      Some trivia from the Coram website: “In 2009, approximately 38,500 kilograms of IVIg were administered to approximately 85,000 patients in the U.S., with an average administration of 453 grams per patient per year.”

      Note- that’s kilo grams!!

    • Dawn Kevies mom
      January 5, 2011 at 12:48 pm

      Hi Yeuhan
      We use coram too. Just curious, did you like them? I have to say we love them. The first company suggested by our hospital was aweful, they left right after acess and did not return our call when Kev was screamig in pain. (blown vein) I had to have my friend, a nurse, come and remove it. Then we found coram.. Our nurse is awesome, it is the same one every time. Instead of falling asleep or reading a book, he engages with Kev. they play xbox, cards, guitar hero, do airsoft target shooting, watch movies, it’s a perfect diversion for Kev. We love our nurse. The delivery is always on time, the pharmacist answers any questions I have. Wow, you would think they were paying me!!

      So how did you find out about this trial?

    • Anonymous
      January 5, 2011 at 1:10 pm

      Hi ‘mom,’ hahahaha……

      Well, I did like Coram. I was referred to them because their sales rep had recently visited the neurologist! I asked for, and received, their best stick. And, by best, I mean he (the nurse) usually got me in one stick every time.

      Moreover, even with a dial-a-flow (which does not work as calibrated due to IVIG viscosity)and not an infusion pump, he knew how to calculate the drip rate rather than use trial and error like so many other nurses did. Finally, when asked, they provided a hardship payment discount that I qualified for. That’s important, you have to ask for it. They are not allowed to advertise discounts, something discussed in the IG Living magazine.

      As for How I found the clinical trial? Truthfully, it was an accident. I was searching for links between IVIG and heart problems when the Coram web site popped up.

      For example: [url]https://www.coramhc.com/News/CoramClick/CoramClick_vol14_0210.aspx[/url]

      Yep, heart is mentioned in the newsletter, twice.

      check out this page:

      [url]https://www.coramhc.com/News/ActionCenter.aspx[/url]

      Then I clicked on tabs and side bars trying to learn more. One thing I want to learn is how to get IVIG when I travel. Coram has a website of locations:

      [url]https://www.coramhc.com/Map/Default.aspx[/url]

    • Anonymous
      January 5, 2011 at 3:47 pm

      I live in Burlington, Vermont. The closest Coram office is near Albany, NY, about 3.5 hours away. They have always gotten my IVIg and supplies to me on time even when they’ve had to drive it up here for same day delivery. The particular people I deal with now are excellent — responsive to emails and usually very good at anticipating deadlines.

      My only hesitation is that I’ve noticed that there has been a lot of turnover at this Coram office through the years. I hope that stops because I really do like working with the current staff.

      Brian Sullivan