| Title |
Genetic Testing and MND. |
| To access it |
View the patient decision aid on the developer website |
| Audience |
People with MND/ ALS who are considering genetic testing (whole genome sequencing). |
| Options included |
Not have genetic testing.
Store a DNA sample, decide about testing later.
Have genetic testing. |
| Year of last update or review |
2025 |
| Format |
Web, paper, PDF, Microsoft Word |
| Developer |
Prof Hilary Bekker, Dr Alisdair McNeill, Dr Jade Howard, Prof Chris McDermott |
| Where was it developed? |
jade.howard@sheffield.ac.uk; a.mcneill@sheffield.ac.uk
University of Sheffield and University of Leeds
UK |
| Health condition |
Amyotrophic lateral sclerosis (ALS) |
| Language |
English |
| IPDAS Qualifying Criteria to be a patient decision aid |
Answer |
| • The patient decision aid describes the health condition. |
Yes |
| • The patient decision aid explicitly states the decision to be considered. |
Yes |
| • The patient decision aid identifies the target audience(s). |
Yes |
| • The patient decision aid lists the options including, if relevant, "wait and see" (e.g., making no change for now, doing nothing). |
Yes |
| • The patient decision aid describes positive features of the options (e.g. benefits, advantages). |
Yes |
| • The patient decision aid describes negative features of the options (e.g. harms, side effects, disadvantages). |
Yes |
| • The patient decision aid asks patients to think about which positive and negative features of the options matter most to them (explicit values clarification)
OR describes what it is like to experience the consequences of the options (physical, psychological, social) (implicit values clarification). |
Yes |
| IPDAS Essential Criteria to lower the risk of making a biased decision |
Answer |
| • The patient decision aid shows the negative and positive features of the options in a balanced manner (e.g., neutral, unbiased, non-directive, complete). |
Yes |
| • The patient decision aid reports where the money came from to develop the patient decision aid and it is clearly stated (e.g., prominent, written in plain language). |
Yes |
| • The patient decision aid provides a production or publication date. |
Yes |
| • The patient decision aid provides information about the proposed update policy (or in a supporting document available to users). |
|
| • The patient decision aid provides complete citations to the evidence selected. |
Yes |
| • The patient decision aid is based on best available evidence that is, where possible, directly applicable to the patients and healthcare professionals using the patient decision aid. |
|
| • The patient decision aid describes how potential users were involved in steps of designing, developing, and/or refining a prototype (or in a supporting document available to users). |
Yes |
| Other IPDAS Essential Criteria for patient decision aids about screening or testing |
Answer |
| • The patient decision aid describes what the test is supposed to measure. |
Yes |
| • The patient decision aid describes possible next steps based on positive test results and negative test results. |
Yes |
| • The patient decision aid describes consequences of a positive screening finding that would not have caused problems if screening had not been done. |
Yes |
Last modified:
2025-07-29.
