Studies closed to recruitment

Information about studies that have closed to recruitment can be found on this page.

Over time, we hope this will become a central source of information to inform people about the results of research studies, and how their outcomes may contribute towards improving the lives of people affected by MND. Click on each study title for further details about the study and links to results and publications that have come from the study.

Change in MND

Study to investigate how different everyday life and functioning factors associated with cognitive and behavioural impairment in people with MND and how this effects the family unit.

Date closed: 25/03/2022

Closed to recruitment, no follow-up. Closed early due to the pandemic.

Apellis MERIDIAN phase 2 trial

A phase 2, randomised, double-blind, placebo-controlled, multicentre study to evaluate the efficacy and safety of pegcetacoplan in subjects with amyotrophic lateral sclerosis (ALS).

Date closed: 07/02/2022

Closed to recruitment, participants in follow-up.

ALSFRS-R online validation study

This study aims to validate patients completing the ALSFRS-R themselves online.

Date closed: 31/12/2021

Closed to recruitment, no follow-up.

TUDCA-ALS trial

The aim of the study is to determine whether TUDCA has an impact on the progression of ALS.

Date closed: 13/12/2021

Closed to recruitment, participants in follow-up.

Post-gastrostomy nutritional management in MND (PostGas)

PostGas: The aim of this study is to understand the reasons behind the poor nutritional outcomes following gastrostomy in the majority of pwMND and provide evidence-based recommendations for the nutritional management of this patient group.

Date closed: 01/11/2021

DiAMoND study

The aim is to develop and pilot a web-based decision aid to support individuals with motor neurone disease (MND) choose whether to have a gastrostomy feeding tube.

Date closed: 04/10/2021

Measuring cognitive and behavioural change in ALS

Cognitive and behavioural impairment in amyotrophic lateral sclerosis: Comparing measures and validating revised consensus diagnostic criteria for amyotrophic lateral sclerosis – Frontotemporal spectrum disorder.

Date closed: 30/06/2021

Closed to recruitment, all data has been collected (no participant in follow-up).

NRF2 biomarkers study

This study aims to assess techniques for measuring glutathione levels in the central nervous system of MND patients and controls using MRI, and also in CSF and blood samples. It may then be possible to use these techniques in future trials of NRF2-activating drugs to assess how well they work in the body.

Date closed: 07/06/2021

Closed to recruitment, follow-up complete.

Biogen C9orf72

A phase one multiple-ascending-dose study to assess the safety, tolerability, and pharmacokinetics of BIIB078 administered intrathecally to adults with C9ORF72-associated amyotrophic lateral sclerosis.

Date closed: 26/05/2021

REVEALS respiratory registry

The overall aim of this study is to identify the most appropriate outcome measures to detect meaningful clinical differences in breathing and cough muscle strength which can be used in future studies to evaluate the effectiveness of new treatments.

Date closed: 28/04/2021

Alexion Champion ALS study

A phase three, double-blind, randomised, placebo-controlled, parallel group, multicentre study with an open-label extension to evaluate the efficacy and safety of ravulizumab in patients with amyotrophic lateral sclerosis (ALS).

Date closed: 21/04/2021

Biogen SOD1

A study to evaluate the efficacy, safety, tolerability, pharmacokinetics, and pPharmacodynamics of BIIB067 administered to adult subjects with amyotrophic lateral sclerosis (ALS) and confirmed superoxide dismutase 1 mutation.

Date closed: 30/11/2020

ILB phase two trial

A phase two study to determine the safety and tolerability of ILB, a type of low molecular weight dextran sulfate, in patients with motor neurone disease (MND) / amyotrophic lateral sclerosis (ALS).

Date closed: 12/10/2020

Closed to recruitment, in follow-up.

HighCALS intervention development study

A qualitative study to develop, refine and assess the acceptability of a complex intervention to increase nutritional intake in people with amyotrophic lateral sclerosis.

Date closed: 30/09/2020

Closed to recruitment, in follow-up.

ProSec 3 study

Date closed: 30/08/2020

Data being analysed.

MIND-MAPS-ALS

Molecular imaging of neurodegenerative disease – Mitochondria, associated proteins and synapses – Amyotrophic lateral sclerosis.

Date closed: 19/03/2020

Closed to recruitment, in follow-up.

MIROCALS

Efficacy and safety of low-dose IL-2 (ld-IL-2) as a Treg enhancer for controlling neuro-inflammation in newly diagnosed amyotrophic lateral sclerosis (ALS) patients: A randomised, double-blind, placebo-controlled, phase two proof of concept / proof of mechanism clinical trial.

Date closed: 04/11/2019

Closed to recruitment, in follow-up.

NiSALS

An international collaboration of neuroscience centres involved in research in MND.

Date closed: 24/10/2019

CSNAT

Enabling tailored and coordinated support for family carers of people with motor neurone disease (MND) through adaptation of a carer support needs assessment tool (CSNAT) intervention.

Date closed: 17/06/2019

Closed to recruitment, no follow-up.

CALL-Me

Assessment of care augmentation by location-linked messaging in amyotrophic lateral sclerosis with respiratory impairment compared with current standard care.

Date closed: 07/02/2019

Closed to recruitment, in follow-up.

BioMOx

The Oxford study for biomarkers in motor neuron disease.

Date closed: 31/12/2018

Current status:

  • Data being analysed.

  • Manuscript in preparation.

  • Results published (links to papers provided).

COMMEND feasibility study

A feasibility study of acceptance and commitment therapy for people with motor neuron disease.

Date closed: 30/11/2018

Closed to recruitment, in follow-up.

Tongue EIM

Developing electrical impedance myography of the tongue for motor system disorder.

Date closed: 31/07/2018

Closed to recruitment, in follow-up.

OPTCARE Neuro

Evaluation of the clinical and cost­ effectiveness of short-­term integrated palliative care services (SIPC) to optimise care for people with advanced long-­term neurological conditions.

Date closed: 10/11/2017

Closed to recruitment, in follow-up.

ALS/FTD study

Is ALS/FTD neuropsychologically distinct from FTD?

Date closed: 15/10/2017

Closed to recruitment, no follow-up.

ALS-CarE

A programme for ALS care in Europe (ALSCarE).

Date closed: 04/08/2017

Closed to recruitment, in follow-up.

Biogen Methodology study

Methodology study of novel outcome measures to assess progression of ALS

Date closed: 31/05/2017

Current status: Analysis

Encore Anywhere

Monitoring and promoting adherence to non-invasive ventilation in motor neurone disease using Encore Anywhere telemonitoring.

Date closed: 01/04/2017

Closed to recruitment, in follow-up.

Using MRI to investigate energy metabolism

Closed to recruitment, no follow-up.