Your Voice; Impact of DMD. A Qualitative Assessment of the Impact of DMD on the Lives of Families.

Dear DMD Community,

While there are a number of publications/guidance/consensus statements related to the diagnosis and management of Duchenne Muscular Dystrophy (DMD) from the point of view of the health-care providers, there is a need for more research to define the key aspects of life with DMD from the perspective of the patient and caregivers, using the patients’ own voice and description of life impact.

To that end, please participate in Your Voice; Impact of DMD.  A Qualitative Assessment of the Impact of DMD on the Lives of Families.  The objectives of this study include;

  • To improve the understanding of the treatment goals that a DMD patient or caregiver may be most interested in based on the severity of their disease

  • To collect evidence, in the patients’ own terms, of the functional burden and the self-identified treatment goals of Duchenne patients and caregivers from their perspective and use this evidence to help identify things important to Duchenne patients to measure in clinical trials.

  • To collect information that will be used to inform the selection of key concepts of interest and development of future clinical outcome measures, including observer reported outcomes/patient reported outcomes

The study is being conducted in individuals age of 11 years or older living with DMD as well as caregivers who have children under the age of 18. To qualify you must meet the following criteria;

  • Participant must have a confirmed diagnosis of DMD, or be the parent/legal guardian of a child with a confirmed diagnosis of DMD. Proof of diagnosis will be required

  • Resident of the U.S.

  • Able to read, write and communicate in English

  • Able to grant informed consent

  • Participant must be 11 years or older. Participants over the age of 18 years of age will provide informed consent. Parents/legal guardian of participants under the age of 18 will provide informed consent for their child. Participants under the age of 18 will provide informed assent.

  • Willing to participate in a one-hour telephone interview between now and January, 2019

  • Ability to view or receive a document from the interviewer before or during the interview (web browser, ability to receive a text, fax or document by mail)

During the interview participants will be asked key aspects of life with DMD, including things that each patient/parent wishes that they or their child could do, but cannot do because of DMD.  Participants will also be asked about how these issues impact their life or the life of their child.  Participants will be paid an honorarium of $100 (US dollars) at the completion of the interview.

To participate, please visit Your Voice: Impact of DMD RSVP.  If you are unable to reach the RSVP from this link, please copy and paste the following URL into your browser bar;

http://www.engagehealth.com/survey/TakeSurvey.aspx?SurveyID=984L694

Thank you for your interest in this important research! 

Sincerely,
Christine McSherry
Founder and President of Jett Foundation
Jett's Mom