[CIS PIDD] [cis-pidd] CVID, NRH and HSCT?

[Sullivan, Kathleen]

I know Elie Haddad has translated a few and we have done a couple here.  There are small numbers at different locations.  It would be great to collect the data and the get the news out.  We were pleased with the outcome of ours (no NRH though)

Kate
On May 10, 2013, at 2:42 PM, Riedl, Marc wrote:


> We have presented a couple of severely affected CVID patients to our Heme-Onc HSCT Committee here over the last several years and to date they have been unwilling to move forward due to a lack of published literature and established protocols.  I wonder if anyone from the NIH could comment as I had one patient that was "evaluated" there but reportedly not transplanted in part due to lack of a suitable donor.

> 

> Best,

> 

> Marc

> 

> Marc Riedl, M.D., M.S.

> Associate Professor of Medicine

> Section Head, Clinical Immunology and Allergy

> UCLA - David Geffen School of Medicine

> 10833 Le Conte Ave, 37-131 CHS

> Los Angeles, CA  90095-1680

> Tel 310.206.4345  Fax 310.267.0090

> 

> 

> From: "<Zachary D. Jacobs>", MD <zjacobs.md at gmail.com<mailto:zjacobs.md at gmail.com>>

> Reply-To: CIS-PIDD <cis-pidd at lists.clinimmsoc.org<mailto:cis-pidd at lists.clinimmsoc.org>>

> Date: Friday, May 10, 2013 11:02 AM

> To: CIS-PIDD <cis-pidd at lists.clinimmsoc.org<mailto:cis-pidd at lists.clinimmsoc.org>>

> Subject: [cis-pidd] CVID, NRH and HSCT?

> 

> Hello all,

> 

> I follow 40 year-old man with CVID, diagnosed about 15 years ago.  For the last several years he has had worsening nodular regenerative hyperplasia associated with his disease, eventually causing portal hypertension, hepatic encephalopathy and TIPS placement.  He is now on the liver transplant list and has actually been given a waiver for this, given his CVID.  Hepatology would like for him to receive a HSCT within 90 days of him receiving his new liver (assuming the transplant happens), to minimize the risk of the pathophysiology repeating itself.

> 

> Does anyone have any experience with this?  Would an immunology center in the US like to evaluate him any further for this?

> 

> Thanks,

> 

> Zach

> 

> --

> Zachary D. Jacobs, M.D.

> 

> The Center for Allergy & Immunology

> 

> Saint Luke’s Physician Partners

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> Medical Plaza II

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Kate Sullivan, MD PhD
Professor of Pediatrics
ARC 1216 Immunology CHOP
3615 Civic Center Blvd.
Philadelphia, PA 19104
(p) 215-590-1697
(f) 267-426-0363



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The CIS-PIDD listserv is supported by the Clinical Immunology Society
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