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Neuromyelitis optica spectrum disorder

Also called: NMOSD · NMO · AQP4-IgG-positive NMOSD · aquaporin-4 antibody disease · Neuromyelitis optica · Devic disease · Devic syndrome

What a donor has to do with this

A transplant is not a standard part of treating this condition. It is used rarely, in particular situations, and most people diagnosed with it will not have one.

This is our reading of published transplant guidelines for this condition, not a measurement of how many people need a donor. Where a source actually counted donors, the figure and the people it counted are shown further down. Where none did, we say so rather than estimate.

This page is not written out in full yet

We have not written this condition out in full yet. What is on this page — how a donor fits in, who it affects, and the sources behind that — is researched and linked, but the plain-English explanation of the condition itself is still to come.

What the evidence says

Who it affects
The 2020 international population-based review found AQP4-positive neuromyelitis optica spectrum disorder onset around age 40 with female-to-male ratios up to 9:1 and higher prevalence in Black and East Asian than White populations.
Treatments other than a transplant
Relapse-prevention options include rituximab and conventional immunosuppression by region.; For AQP4-IgG-positive disease, targeted approvals include eculizumab/Soliris (US 2019), inebilizumab/Uplizna (US 2020), and satralizumab/Enspryng (US 2020), with subsequent regional approvals.; High-dose corticosteroids and plasma exchange/immunoadsorption treat acute attacks.
If a transplant is used, the cells come from
autologous mobilized peripheral-blood stem cells (dominant contemporary source); bone marrow: not reported in the opened disease-specific sources; cord blood: not reported in the opened disease-specific sources
How often the donor was unrelated
Not reported. No source we could read states this for this condition, so we do not give a number. An estimate here would be a guess dressed as evidence.

Where this gets complicated

The older EBMT cohort often retained AQP4 antibodies and relapsed, whereas small later protocols reported better disease control; regimen and biologic selection differ.; Current targeted monoclonal antibodies substantially weaken the case for HCT outside trials or extraordinary rescue situations.; NMO is the historical term; NMOSD is broader, and AQP4-positive and antibody-negative/MOG-associated phenotypes should not be pooled uncritically.

Written for transplant clinicians, not for patients. We quote it so you can see what the guidance actually says:
“In NMOSD, evidence is still insufficient to support AHSCT outside clinical trials”

It describes what teams consider in general. It cannot say what applies to any one person. Read the source.

Registries need people

An unrelated donor is not a usual part of treating this condition. Registering still matters, for the many conditions where it is.

Joining a registry is a cheek swab and a short health form. You are not matched to a condition — you are matched to a person, and it could be someone with any of the conditions in this library. You are contacted only if you turn out to be a possible match for someone, and you can ask questions and decline before anything else happens.

Find your registry

Related conditions

Others in autoimmune conditions. They are genuinely different diseases with different treatments — the group name is not a diagnosis.

Where this came from

Neuromyelitis optica spectrum disorder — what a bone marrow donor has to do with it | Jada Bascom Foundation