A report of resources used by clinicians in the UK to support motor neuron disease genomic testing

Figures & data

Table 1. Resources for people with MND and family members around genetic testing.

	What leaflets and websites do you provide (or signpost) to people with MND on genetic testing?		What leaflets and websites do you provide (or signpost) to at-risk relatives of people with MND on predictive testing?		What letters, leaflets or websites do you provide to people having MND genetic testing or predictive testing to facilitate family communication?
	MND/ Neurology centers	Genetics centers	MND/ Neurology centers	Genetics centers	MND/ Neurology centers	Genetics centers
MND Association resources	15	7	13	8	9	1
MND Scotland	0	2	0	2	0	1
US based charities/ patient organizations (ALS.org; MDA.org)	0		1	0	0	0
Locally produced leaflets	3	1	2	2	3	0
Genereviews	0	2	0	2	0	0
Genetic alliance	0	0	1	0	0	0
Healthtalk.org section on inherited MND	1	0	1	0	1	0
Genetic testing decision tool Mnddecisiontools.com	1	0	1	0	1	0
NHS care centre/ department websites	2	0	2	0	1	1
Other NHS resources (leaflet on WGS)	1	1	0	1	0	1
Tailored summary/ clinic letter	0	0	0	1	2	4
Tailored family letter/ To Whom It May Concern letter	0	0	0	0	0	7
Support groups	0	1	0	1	0	1
Signpost/ referral (to genetics/ neurogenetics/GP)	2	0	3	1	5	2
Dementia resources (GENFI; Alzheimer’s society; Dementia UK)	0	3	0	3	0	2
Referral to research groups/ networks/ related resources	0	0	1	1	0	1
Clinical appointments (to support family communication)	0	0	0	0	0	1
None	1	2	2	1	2	1
N/A	0	2	0	2	0	2

Table 2. Educational resources and training for staff around genetic testing.

	What educational resources or training do you have to support staff with MND genetic testing?		What educational resources or training do you have to support staff with MND predictive testing?
	MND/ Neurology centers	Genetics centers	MND/ Neurology centers	Genetics centers
MDT/ peer/ case discussion and support	2	2	2	2
Via genetics service	1	1	2	1
Study days and Continuing Professional Development (CPD)	0	3	0	3
Conferences, symposiums and network meetings	1	3	2	3
Clinical supervision	0	1	0	1
Shadowing and observation opportunities	1	0	1	2
NHS genomics training (Genomics Education Programme; NHS Genomic Medicine materials)	2	2	1	0
Local training (annual training day; clinical support and letter sign off)	0	1	0	1
Decision support resources (Skilled helper decision counseling; decisional balance sheet)	0	0	1	1
Anxiety and depression assessment tools	0	0	1	1
MND Association virtual faculty / professional resources	3	1	1	0
Other MND Association resources	4	0	2	0
Journal access	0	2	0	0
Guidelines and policy documents (e.g., national genomic test directory, Huntington’s disease adapted protocol)	1	1	1	4
Locally developed pathway	0	0	1	1
None	5	5	6	6
N/A	0	2	1	2
Not answered	0	1	0	1