Skip to main content

Table 1 Simplified description of data captured in TREAT-NMD CTSR

From: The TREAT-NMD care and trial site registry: an online registry to facilitate clinical research for neuromuscular diseases

Patient cohort Patients stratified by disease and age range (currently 10 NMDs including subtypes e.g. SMA I, II, III).
Diagnostic tools as most appropriate for each condition.
Care settings Availability of specialists and services in-centre.
Arrangements for transition care.
Availability of particular pulmonary, cardiac, muscle and bone function tests in-centre.
Availability of particular physiotherapy facilities and equipment in-centre.
Availability of emergency care in-centre.
Experience of centre in conducting skeletal muscle biopsies.
Research and education Extent of use of centre data in research, research funding arrangements, and papers authored by staff at centre
Extent to which staff at centre have been involved in providing training at national and international levels
Clinical trial infrastructure Available personnel (e.g. Study Nurses, Physiotherapists, Pharmacists)
Previous experience (e.g. details of past participation in Phase I, II, III, IV clinical trials)
  Availability and details of equipment (e.g. refrigerators, IT support)