For Researchers
Introduction
Muscular Dystrophy Ireland (MDI) believes that research is the most effective way to improve understanding of neuromuscular conditions and to develop better treatments and services. MDI supports research and researchers in a variety of ways, including acting as gatekeepers to assist with recruitment for studies, facilitating community involvement in the planning of research, offering grant schemes, disseminating research findings, and collaborating with academic institutions. MDI also uses research to advocate for improved services and supports for people living with neuromuscular conditions in Ireland.
Depending on the type of research request made to MDI, you may be invited to complete an application form. The success of your application will be evaluated based on several factors, including the quality of the content, potential participant burden, impact, and relevance to people with neuromuscular conditions. Other considerations include the involvement of Public and Patient Involvement (PPI) in your study design, alignment with MDI's Strategic Objectives, capacity, and planned outputs.
Researchers who collaborate with MDI will be required to share their results and outcomes with the MDI community upon completion. These results must be presented in a clear, easy-to-understand, and accessible format for a broad lay audience.
Oversight of MDI's research activities is provided by the MDI Research Committee.
Research Grant
Muscular Dystrophy Ireland (MDI) is committed to funding research that advances our understanding of neuromuscular conditions and supports those affected by muscle-wasting diseases.
We are currently accepting expressions of interest for the HRCI-HRB Joint Funding Scheme 2025/2026.
Expressions of interest will close on 10 September.
We are accepting proposals that are aligned with MDI’s Research Strategy, and we encourage applicants to consider how their proposed project could align with longer-term strategic priorities and have the potential for sustained impact or future development.
The maximum funding available is €140,000 for a 12-24-month project duration.
Information on this funding call, including the application process and eligibility criteria, is available to view here.
Recruitment Request
MDI can assist with the recruitment of participants for studies that are relevant to the neuromuscular community. This may include individuals with a neuromuscular condition, their carers, or family members. Before advertising and supporting a study, we need to understand its purpose, what it entails and its relevance to people with neuromuscular conditions. We will also consider potential participant burden, impact, alignment with MDI’s strategy, and the use of PPI in the study design.
If you would like MDI to promote your study and act as a gatekeeper to aid recruitment, please complete the “Recruitment Request Form” and return it to mdiresearch@mdi.ie along with the following documents:
Copy of ethical approval
Participant information sheet and consent form
Please complete the Recruitment Request Form with as much detail as possible. We will endeavour to respond to your request as promptly as possible. Please allow up to 3 weeks for a decision.
Patient and Public Involvement
As a patient-led organisation, people living with a neuromuscular condition (NMC) are at the heart of everything we do. It is essential that the voices of individuals with NMC, along with their families and carers, help to guide the research and development activities that will impact them. We believe that involving people with lived experience of NMC will enhance the quality and relevance of research.
MDI’s patient and public contributors are composed of people living with a neuromuscular condition, as well as their families and carers, who are actively involved in research as co-researchers. As experts by experience, they have the ability to influence, advise, and collaborate with researchers. Their work is defined as Patient and Public Involvement (PPI), in which they partner with researchers throughout all stages of the research process, from co-designing research questions to disseminating findings to the community.
MDI is committed to fostering and supporting PPI in research. One of MDI’s strategic research aims is to amplify the voice of individuals with neuromuscular conditions and create a platform for their perspectives to be heard. MDI is dedicated to involving its community from the outset of research, ensuring that members of its PPI Network have meaningful input throughout all stages of the research process.
PPI activities include:
Co-designing research projects and proposals with researchers.
Reviewing research grant proposals.
Developing and reviewing study information for participants such as patient information leaflets or other research materials to ensure they are user friendly, readable, and understandable to its target audience.
Reviewing survey questions and / or responses.
Any application you make should be directly relevant to people with neuromuscular conditions, and you should have a clear plan for involving members of MDI’s PPI Network. It is important to ensure that their involvement is meaningful and that they have a genuine opportunity to contribute to your work. Additionally, you must provide support to our PPI members throughout their involvement, such as keeping them informed and updated on the progress of the research and being available to answer any questions they may have. You should also be prepared to reimburse their reasonable expenses.
By requesting our help to reach the community we serve, you are entering into a PPI relationship not just with those community members but also with us as an organisation. We have certain expectations of PPI collaborations we enter into. We also want to be clear about what you should, and should not, expect from our organisation. We therefore encourage you to read our Expectations of Engagement document before submitting your PPI request.
To ensure best practices, we require researchers to complete the Application Form for Public and Patient Involvement (PPI) Support.
If you have any questions about the application process, please email mdiresearch@mdi.ie
A Researcher’s Perspective on the Impact of PPI in Research
We’re pleased to share an article from Brona Mulligan, highlighting the impact of Public and Patient Involvement (PPI) in her research. This piece explores how PPI influenced her approach, enriched the research process, and contributed to more meaningful outcomes. It offers valuable insights into how engagement with patients and the public can shape the research lifecycle. We’re grateful to Brona for sharing her experience and perspective with us.
Click here to read this article.
Applying for PPI Support in Research Activities
Read “MDI Expectation of Engagement” document
Complete the Application form for “Patient and Public Involvement (PPI) Network Application Form” and return it to the MDI Research Officer by emailing mdiresearch@mdi.ie We aim to acknowledge your application within 7 working days.
If you have any questions about the application process, please email mdiresearch@mdi.ie