Adelphi Values would like to interview people from the Duchenne community

Dear Potential Participant,

We invite you to take part in an interview study being conducted by Adelphi Values. Adelphi Values is a health research organisation that works with companies that make medicines (pharmaceutical companies) to assess the impact of health condition and treatment on people’s lives.

What is the study for?

Adelphi Values are conducting an interview study on behalf of a pharmaceutical company. The aim of the interviews is to increase understanding of patient, caregiver, and clinician’s views about what changes in symptoms and functional abilities are important for individuals with Duchenne Muscular Dystrophy over time. The information will be used to develop instructions that will help clinicians and caregivers to assess change in the health status of individuals with Duchenne. By participating in an interview you will help to support pharmaceutical companies with their research relating to potential treatments for Duchenne and will also increase the knowledge of Duchenne across the scientific community.

The research will comply with UK Data Protection law, with the British Healthcare Business Intelligence Association’s (BHBIA) Legal & Ethical Guidelines and with the ABPI code.

What does the study involve and who can take part?

Taking this opportunity to have your voice heard would greatly help us further our research, and your participation would be hugely appreciated.

We are looking to interview individuals with Duchenne (aged 11-25 years old) WITH their parent/caregiver; we are also looking to interview parents/caregivers of individuals with Duchenne (aged 6-11 years, or 11-25 years old) WITHOUT interviewing the individual that they care for:

• If you are an individual with Duchenne you will be asked to take part in one 30-minute interview in which will be asked about what it is like to have Duchenne, how your condition has changed and how important these changes are.
• If you are a parent/caregiver of an individual with Duchenne there are two interviews that you may be invited to take part in:
• Interview 1: A 45-minute interview to help us to understand symptoms and functional impacts related to Duchenne and which are important to patients and caregivers.
• Interview 2: A 30-minute interview to help us to understand if caregivers understand the instruction document (developed based on interview 1) and if it is relevant and clear.

You may be asked to take part in either Interview 1 or Interview 2, or both Interview 1 and Interview 2.

All interviews will ideally be conducted face-to-face but where this is not possible they will be conducted via telephone or Skype (whichever you prefer). The interviews will be conducted by an Adelphi Values trained interviewer and will be scheduled at a time and date that is convenient for you.

You will remain anonymous unless you give permission to be identified. Your responses will be added to the answers of other participants to provide an overall understanding. Your information will only be used for this purpose and will not be passed to any third party without your permission. If you wish to see it, we will be happy to supply a copy of the privacy policy that applies to your participation in this market research study.

The interview may be watched as it happens through a one way mirror and it will be audio recorded for the purposes of analysis. The recording will only be available to Adelphi Values staff who work on this project only.

Parents/caregivers will receive £60 for your participation in the 45-minute interview and parents/caregivers/individuals with Duchenne will receive £30 for participation in the 30-minute interview.

Thank you for taking the time to read this letter. We look forward to your participation.

If you have any questions about this letter or the study, or if you are interested in taking part in this study, please contact Emma Wilson, Adelphi Values, via e-mail or telephone:

Email: emma.wilson@adelphivalues.com

Telephone: 01625 578640

What happens next?

• Once you have told us you are interested in taking part in this study, Adelphi Values will contact you with some further information about the study and ask you/the individual you care for some questions to see whether you/the individual you care for are eligible to take part.
• If we think that you/the individual you care for are eligible to take part in the study, Adelphi Values will send you information and consent forms to read (either by email or post). If you/the individual you care for wish to take part in this study you/the individual you care for will be asked to sign the relevant consent form and return this to Adelphi Values before any research activities can take place.
• Adelphi Values will then inform you/the individual you care for about the next steps of the study (for example, providing responses to demographic and clinical questions) and schedule a convenient time for the interview(s).