• Welcome to imPORTND!

    imPORTND logo

    These online trainings are co-designed by a team of patient-partners, researchers and clinicians to support research that is informed by and most meaningful to those living living with neuromuscular conditions. Other patient-oriented research trainings exist, but these are the first with a focus on neuromuscular disease and rare disease. As part of this, we have a whole section on inclusivity and accessibility in research.

    We come with different experiences and knowledge. This training is designed for users to decide what their own and their team learning needs are and to select those activities which will be most helpful. We encourage everyone on your research team to complete the trainings, there is something for everyone.

    Click here for instructions on how to navigate imPORTND and begin learning!

    We welcome your feedback, contact us!

Available courses

Before you start, find out what imPORTND is about and how to work your way through the training. This will take you between 5-10 minutes.

In this course we learn what Patient-Oriented Research (POR) means. It is more than token patient involvement. For researchers and patients to work together meaningfully, we need to understand our own attitudes, respect different perspectives, and identify what skills and help we need to do this well.

(Most users complete this module in one hour)

This course presents a series of learning activities to equip research teams and patient-partners with the skills and resources needed to support inclusive and equitable research to more fully represent the diverse population of those living with a neuromuscular condition, and to support the accessibility needs of patient-partners engaging in research.

(Most users complete this course in one hour)

This is the library of handouts and resources created for and found throughout the imPORTND activities.

The focus of this course is on specific skills to help with patient-oriented research. This includes how to develop an effective patient engagement plan, how to share and listen to patient stories, how to work effectively in groups and how to evaluate the project engagement. Tools and resources are provided. This module also links to a supplemental external training.   

(Most users complete this course in 45 minutes, additional time for the external training will vary)