MND Register Dataset

The data we colect as part of our project can be found in the table below:

No. Data item Options/ data definition
1 Unique ID number
2 First Name
3 Surname
4 NHS Number
5 Patient/control
6 Date of birth
7 Date of death
8 Notes
9 Sex Assigned at birth
10 Ethnicity

White: A British; B Irish; C any other White background

Mixed: D White and Black Caribbean; E White and Black African; F White and Asian; G Any other mixed background

Asian or Asian British: H Indian, J Pakistani, K Bangladeshi, L Any other Asian background

Black or Black British: M Caribbean, N African, P Any other Black background

Other Ethnic Groups: R Chinese, S Any other ethnic group, Z Not stated

National code Z - Not Stated should be used where the PERSON has been given the opportunity to state their ETHNIC CATEGORY but chose not to.

11 Postcode of residence at diagnosis Full post code data collected e.g. SE5 8AF
12 Source of ascertainment Options include: MND Care and Research Centre, Specialist Neurology Outpatient Clinic, General Neurology Outpatient Clinic, Clinical Nurse Specialist, Community Multidisciplinary team, Hospice, Other
13 Date of diagnosis Date that the diagnosis was first discussed with patient, by the ascertaining centre.
14 Diagnosis Type of motor neuron disease
15 Co-morbidity

Available options in drop down menus: Cancer, Cardiovascular disease, Parkinson’s disease, Psychiatric disorder(s), Auto-immune disorder(s), Absent/unknown

Free text box available for: Co-morbidity, other

Two co-morbidities can be indicated

16 Date of symptom onset

Reported by the patient when:

  • Limb symptoms: muscle weakness was noticed
  • Speech/swallowing difficulties
  • Respiratory symptoms: dyspnea was noticed
  • Generalized symptoms

In most cases middle of period:

  • E.g. January 2014 -> 15 January 2014
  • In 2014 -> 1 July 2014
  • Winter (spring, summer, autumn) 2014 -> 1 February 2014 (May, August, November)

Except for:

  • Beginning of 2014 -> 1 January 2014
  • End of 2014 -> 31 December 2014
  • Patient seen on 23 July 2014: “Five months ago…” -> 23 February 2014 – Patient knows exact date
17 Site of onset
  • Site of onset: Bulbar, Spinal, Thoracic/respiratory, Generalized (e.g. both swallowing issues and weakness in leg reported at the same time)
  • If Spinal, then select: Arms, Legs (dropdown box); and select: left, right (dropdown box)
  • Other first symptoms:
    • Weight loss (tick box) (>10% weight loss in 6 months prior to time of disease onset as defined by date of onset symptoms)
    • Cognitive or behavioral (tick box)
18 Limb dominance Leg (L/R), Arm (l/R)
19 Current number of regions affected Speech, swallowing, Hand (L/R), arm (L/R), foot (L/R), leg (L/R) trunk, breathing.
20 Cognitive impairment Yes/No (and details of formal assessment where applicable)
21 El Escorial Category El Escorial categories: Suspected ALS, Possible ALS, Probable ALS, Definite ALS
22 El Escorial date
  • Date of ALS-FRS-R (date field)
  • ALS-FRS-R 12 sub scores(number fields)
  • ALS-FRS-R total score (automatically calculated)
24 Forced vital capacity
  • Forced Vital Capacity table (preferred):
    • Date FVC (date field)
    • FVC (liters) (open text field)
    • FVC (% of predicted) (open text field)
    • Testing not performed or not feasible: Not tested, Not feasible
25 Sniff Nasal Inspiratory Pressure
  • SNIP table (optional)
    • Date SNIP (date field)
    • SNIP (cm H2O) (open text field)
    • Testing not performed or not feasible: Not tested, Not feasible
26 Family history

Family history – Number of affected family members with ALS/MND and FTD/Dementia

  • NIP table (optional)::
    • Date SNIP (date field)
    • SNIP (cm H2O) (open text field)
    • Testing not performed or not feasible: Not tested, Not feasible
27 Progression
  • Date of death (date field)
  • If tracheostomy, date of tracheostomy (date field)
  • If >23h NIV/day, date of endpoint (date field)
  • Date of checking (if not deceased, no tracheostomy and no >23h NIV/day) (date field)
28 ECAS cognitive screen
29 ECAS behavioural screen
30 Height (cm)
31 Weight (kg)
32 Medications
33 Gastrostomy
34 Respiratory intervention