We need your help to develop and plan research!

July 18th, 2023


We need your help to develop and plan research!

MDI strives to support and fund quality research into neuromuscular conditions. However, when planning research, the expertise of people with lived experience of the condition is sometimes missing. It is important that this lived experience is combined with the expertise of researchers. This partnership can enhance the quality and relevance of research, ensuring that it becomes more meaningful and acceptable to the very people it is intended to benefit.

Patient and Public Involvement

The partnership between researchers and people with conditions is formally called Participant and Public Involvement (PPI). It is a two-way relationship between members of the public partnering with researchers to help decide what research is done and how it is done. Examples of PPI include developing the research question, co-designing participant information leaflets, reviewing survey questions.

Who are PPI contributors?  

PPI contributors are us and people all around us, such as a person on the bus or the neighbour next door. PPI contributors wear many hats; for example, they may have lived experience of a condition or be a carer, parent, employee, student, or a brother or sister of someone who has a neuromuscular condition. People are bringing all their expertise to the table, not just their experience of the topic been researched.

MDI advisory PPI panel

MDI is committed to bringing the voice of our community into the development and planning of research that is of relevance to the community. To ensure the unique insights of people with neuromuscular conditions are included in research projects from the earliest stages, MDI want to set up a PPI advisory group of people with lived experience of neuromuscular conditions. Members of the PPI advisory group will advise on various research activities that are supported by MDI.

What to do next

We are currently looking for individuals to be part of a joint research project that is been funded by the Health Research Board. The deadline for this expression of interest is 31st August 2023. If this interests you, please contact Dympna Mulroy (MDI Research Officer) who can answer any questions you may have and provide more information on what is involved.

Contact details:

Email: mdiresearch@mdi.ie

Phone: 086 6066109


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Categories: Research

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy
  •     •  General
  •     •  MDC1A (merosin-deficient congenital muscular dystrophy)
  •     •  Rigid spine syndrome (RSS)
  •     •  Ullrich congenital muscular dystrophies
  •     •  Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy
  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD)
  •     •  General
  •     •  LGMD 1B (also known as Laminopathy)
  •     •  LGMD 1C (also known as Caveolinopathy)
  •     •  LGMD 2A (also known as Calpainopathy)
  •     •  LGMD 2B (also known as Dysferlinopathy)
  •     •  LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Congenital Fibre-type Disproportion Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositis

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Friedreich’s Ataxia

12. Other (Please Specify)

13. Unspecified