Myotonic dystrophy Type 1: exploring the health care experiences of people living with DM1. A Research Protocol

Figures & Tables

Group 3 Health care professionals
Inclusion Criteria	Exclusion criteria
Have provided care to people living with DM1 in the past 12 months.Provided care directly related to the DM1 condition – e.g., symptom management, symptom monitoring (cardiac or respiratory tests, physical therapy).Have greater than 12 months experience in health care delivery for people living with DM1.	Less than 12 months experience of DM1 care provision.

Group 2 Support people: family, carers, friends of a person living with DM1
Inclusion Criteria	Exclusion criteria
Aged 18 years or over.Be able to speak, read and write in English.Able to give consent to participate on their own behalf.Have attended a health care appointment supporting a person with DM1 in the previous 12 months.	Under the age of 18 years.Has not assisted a person with DM1 in health care participation.

Group 1 People living with DM1 diagnosed by a medical specialist by positive genetic testing and/or recognised family inheritance.
Inclusion criteria	Exclusion criteria
Aged 18 years or over.Be able to speak, read and write in English.Able to give consent to participate on their own behalf.Have attended a health care appointment in the previous 12 months.Be willing and able to take part in a recorded interview for approximately 1 hour.	Under the age of 18 years.Have a known cognitive impairment that impacts on their ability to provide informed consent on their own behalf.