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

[Elie Haddad]

Hello,
Actually we have transplanted one patient who had a CVID and who suffered from a GLILD and an autoimmune granulomatous process that involved the CNS that became eventually resistant to Rituximab. She received a double cord blood transplantation 3 years ago, when she was 16 year old. Her immune reconstitution is not that fantastic, particlularly if one looks at her T cells, with no naive T cells. She is still under immunoglobulins, but does not suffer anymore of her GLILD or of her autoimmune process in CNS. One could say that she is alive and well. Nevertheless, she recently presented with a severe haemolytic autoimmune anemia....and we had to give Rituximab.
3 cases have been published in JACI.
There is presently a project aimed to compil all patients transplanted for CVID that were reported to CIBMTR and this project is leaded by Geoff Cuvelier, from Winnipeg.
Hope this helps
Elie

Elie Haddad, MD, PhD,
Professor of Pediatrics, University of Montreal,
Head, Pediatric Immunology and Rheumatology Division,
CHU Sainte-Justine, 3175 Cote Sainte-Catherine
Montreal, QC, H3T 1C5, Canada
Ph: 1 514 345 4713
fax: 1 514 345 4897
e-mail: elie.haddad at umontreal.ca





Le 2013-05-10 à 14:47, Sullivan, Kathleen a écrit :


> 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

>> 

>> 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

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