MND Register Dataset

The MND Register contains a broad set of clinical and demographic information. The full Register dataset comprises 34 potential variables. However, not all data items are collected for every individual or at every participating site.

To ensure a consistent core dataset across the Register, participating sites are expected to collect a minimum set of mandatory data items. Additional data items are collected where this is feasible and where the information is available as part of routine clinical care or local data collection.

The mandatory data items include:

  • Unique ID number
  • Date of birth
  • Name & Surname
  • NHS Number
  • Sex assigned at birth
  • Postcode of residence at diagnosis
  • Date of diagnosis
  • Diagnosis
  • Date of symptom onset
  • Site of onset
  • Date of Death

The remaining data items are optional and may be collected depending on the capacity and feasibility of the participating site and the availability of the information.

Therefore, while the Register has the potential to contain 34 different data items, individual records will not necessarily contain information for all 34 items. Data completeness varies by data item, patient and participating site, and researchers should take this into account when interpreting or analysing Register data.

The table below describes the full range of data items that may be recorded in the MND Register and provides further information on their definitions and available options.

For researchers or those planning to request a data-sharing agreement, please see the metadata for detailed information on the structure of the collected data.

 

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
23 ALS-FRS-R
  • 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