Hematopoietic Stem Cell Transplantation (HSCT) for Mitochondrial
Neurogastrointestinal Encephalopathy (MNGIE): a Single Center Experience
Underscoring the Multiple Factors Involved in the Prognosis.
Abstract
Background: Mitochondrial Neurogastrointestinal Encephalomyopathy
(MNGIE) is a progressive autosomal recessive disorder characterized by
cachexia, gastrointestinal (GI) dysmotility, ptosis, peripheral
neuropathy and brain MRI white matter changes. Bi-allelic TYMP mutations
lead to deficient thymidine phosphorylase (TP) activity, toxic
accumulation of plasma nucleosides (thymidine and deoxyuridine),
nucleotide pool imbalances and mtDNA instability. Death is mainly due to
GI complications: intestinal perforation, peritonitis, and/or liver
failure. Based on our previous observations in 3 patients with MNGIE,
that platelet infusions resulted in a transient 40% reduction of plasma
nucleoside levels, in 2005 we performed the first HSCT worldwide as a
life-long source of TP in a patient with MNGIE. Procedure: HSCT was
performed in a total of six patients with MNGIE. The multiple factors
involved in the prognosis of this cohort were analyzed and compared to
the literature experience. Results: Cell source was bone marrow in five
patients and peripheral stem cells in one, all from fully HLA-matched
related donors, including four who were TYMP mutation carriers. Four of
six (66%) survived compared to the 37% survival rate in the
literature. Reduced intensity conditioning regimen contributed to
secondary graft failure in 2 patients. 15 years post-HSCT the first
transplanted patient is seemingly cured. Severe GI symptoms
pre-transplantation were mostly irreversible and a poor prognostic
factor. Conclusions: Allogenic HSCT could constitute a curative
therapeutic option for carefully selected, young, pre-symptomatic or
mildly affected patients. Timing, donor selection and optimal
conditioning protocol are major determinants of outcome. HSCT is
inadvisable in patients with advanced MNGIE disease.