22 April 2026 News
Average wait times for genetic testing for people with motor neurone disease (MND) have dropped from 18 months to around three months, research by the MND Association reveals.
The decrease follows more than a year of engagement by Association teams with NHS England’s Genomic Medicine Service, raising concerns about the impact delays in genetic testing have on people with MND.
About 1 in 10 people diagnosed with MND have a family history of the condition, known as inherited MND.
Genetic testing can help those people and their families understand their risks, plan for the future and gain clarity around diagnosis. It can also help determine whether a person is eligible to take part in research or to receive targeted treatments including tofersen.
Tofersen, currently being appraised by NICE for future prescribing by the NHS, is the first drug to significantly slow and, in some cases, even halt progression of MND for people with a particular inherited type of the disease caused by a change in their SOD1 gene.
Our work so far
Since early 2025, the Association has been raising concerns with NHS England about long waiting times and inconsistent access to genetic testing results across the country.
This included calling for MND tests to be fast-tracked and proposing an early SOD1 reporting system in areas with longer wait times.
Already used for other tests, this system allows labs to report positive SOD1 results sooner while full genetic analysis continues. This was implemented in several areas, meaning that people with SOD1 MND could discuss access to tofersen with their medical team faster.
We also put genetic testing and precision medicine at the forefront of our first-ever fringe event panel on MND at the Labour Party Conference in Liverpool last October, spurring on further engagement with NHS England.
Our research
NHS England guidelines state that, as a rare disease, results of MND genetic test results should be shared within 84 days of receiving the sample at the lab.
In 2025, we heard reports of people waiting up to 18 months for their results. That’s changed. Our most recent survey of the 24 MND Association funded Care Centres and Networks in March 2026 received 22 responses.
We heard that:
- All MND Care Centres and Networks in England and Wales are now routinely offering genetic testing to everyone with MND or providing it when asked.
- Turnaround times for MND genetic test results have reduced to three months across the national genomics service, with most notable improvements in London where waiting times have dropped from 18 to three months for MND tests.
- The early reporting system proposed to NHS England has been implemented in areas with longer wait times with positive SOD1 results being reported within three months to help facilitate access to tofersen.
SH: What’s next?
The current guidelines state that people with MND must receive genetic testing results within 84 days. We believe it can – and should – be done more quickly. We also want to make sure that people who live outside of the care centre areas can access a test.
We’re working with NHS England, clinicians and people affected by MND to understand how quickly genetic testing can be completed and how we can make sure that becomes a reality.
We’re also continuing to support expansion of genomics education to build confidence among healthcare professionals to conduct genetic testing and counselling, funding the development of tools that support patient decision-making, and exploring the use of artificial intelligence to help meet increasing demand within the genomics workforce.