• A new UK-based research project to understand ‘normal breathing’ in under 6’s calls for participants to help our XLMTM community
    About the “Breathing Muscle Strength in Healthy Children” Study at Brunel University London Brunel University London is involved in an […]
  • The First Cork Hope Walk
    It really didn’t matter that it rained on and off, nothing could spoil the good mood of the walkers who had come along for the first Cork Hope Walk. The 8km walk, which was arranged by Orla Lynch and Stephen Stack, took us along the beautiful Rochestown to Blackrock coastal path. The views were stunning despite the grey sky, and we even got to admire Blackrock Castle where we stopped for the obligatory group photos. […]
  • Fundraising For Ruben
    Over 230 guests attended a hugely successful evening event that was arranged by Siân Carson whose gorgeous one year old son, Rubén, has myotubular myopathy. For the price of their tickets guests got to enjoy a beautifully decorated venue, lovely food, great music and endless great opportunities to raise funds. And boy did they do an amazing job of raising funds… […]
  • The Devon Hope Walk turns into a series of walks, raising over £1300 for Myotubular Trust!
    This year we tentatively planned a fourth Devon Hope Walk for the Myotubular Trust for early September, hoping everyone could make it, after once […]
  • Pretty Muddy Race For Life 2019
    Massive thanks and congratulations to Sarah, Emily and Tara, who recently took part in the 10K Pretty Muddy Race for Life at Sefton Park, Liverpool. […]


The Myotubular Trust Research Grant Process

There are four key stages to the process of making a research grant:

  • The invitation to apply, known as a ‘call for grants’
  • The writing and preparation of an application by a scientist, or team of scientists
  • The assessment of applications, known as the ‘peer review process’
  • The final decision and announcement of grants

The Call for Grants

Firstly an advance notice of a call for grants is issued to give the academic community time to hear about the funds available, and to consider making an application.  Different organisations and communities of interest are identified by the Trust, and asked if they would publicise our advance notice; organisations such as the ENMC (European Neuromuscular Consortium), the World Muscle Society, GIG (the Genetic Interest Group)…etc.   This helps us ensure word spreads in the relevant academic fields.

The call for grants is issued in the autumn, and sets out the types of grant we would like to fund and the criteria by which we will assess applications.  The call for grants and the relevant application forms are published on the Myotubular Trust website.  Again, relevant academic organisations and interest groups are notified and asked to publish the notice of the call for grants in their usual communication channels such as journals, email groups, group meetings, etc.

Development of Grant Application

Scientists are given a specific date by which their applications must be submitted.  This is usually about a three-month period as the application covers a very detailed scientific proposal, together with a breakdown of the funds required.

Scientists download application forms from our website and then work in collaboration with their university or laboratory to prepare a detailed proposal to send to us.

Peer Review Process

When all the applications have been received we begin the process of peer review. One of our goals in setting up the Myotubular Trust was to create a world-class peer review process based on the very best practice in the medical academic community.

There are a number of discrete steps to the peer review stage:

  1. All the applications that fit the remit of the Trust are then sent to each member of the Myotubular Trust Scientific Advisory Board (SAB). The SAB is made up of eminent scientists in each of the relevant fields from which a cure for centronuclear/myotubular myopathy is likely to emerge. The current SAB includes not only neuromuscular expertise but also neurology, cell biology, cell signalling, gene therapy and genetics. This range of expertise is required to be able to properly assess the different strands of science likely to be involved in applications.  The SAB also includes a minimum three non-voting lay members to represent the views of patients and families.
  2. The SAB individually considers all the applications and then comes together to assess them jointly. They have two key decisions to make – which of the applications are the most likely for the Trust to fund and therefore merit being sent for peer review; and which international scientists should be asked to peer review each application – ideally 3 peer reviews per application.  The choice of peer reviewer will be based on their expertise in their field, the specific science they represent and any possible conflicts of interest.
  3. The proposed peer reviewers are contacted by the Trust on behalf of the SAB, and asked if they would consider reviewing a certain application. When they agree they are sent a series of questions, via an online questionnaire, which when complete they send back to us.
  4. When all the peer review assessments have been received they are collated by the Myotubular Trust and sent to the members of the SAB. They individually consider these reviews and then come together again to assess them jointly.  They rank all the applications based on their interpretation of the peer review feedback, and the criteria of the Myotubular Trust.  They then make final recommendations as to which grants in their opinion merit funding.

Decision and Announcement

The final decision as to which grants should be funded is then taken by the Trustee Board of the Myotubular Trust.  We review the recommendations made by the SAB, consider what we believe to be in the best interest of the CNM/MTM community, and of course discuss and agree the financial provision required to guarantee the funds.  When we have discussed and agreed all these factors a final decision is made, and both the successful and unsuccessful candidates are informed.  We also make sure that all candidates get feedback about their individual application. An announcement is then made to the CNM/MTM community.

From receipt of completed applications to the final decision can take three to four months.  This is to allow time for each stage of assessment to be made properly and to take account of the diaries and commitments of the scientists who so generously give their time and expertise.

Projects or fellowships begin in around September or October in line with the academic year.  Each project will usually last between 2 to 3 years, with six monthly reviews received by the Trust. At the end of the project the results will be published and also shared with the CNM/MTM community.

Choose your language...