Patient Perspective Interview for Adolescent Patients with a MELAS diagnosis

• Goal: Conduct interviews with adolescent patients who are clinically and genetically diagnosed with MELAS to collect perspectives that will help shape how the effects of a drug in development will be assessed in an upcoming clinical trial
• Open to English-speaking patients ages 12 – 17
• Participants will receive $150 for completing two 45-minute interviews ($75 per interview) from the comfort of your home and at your convenience.
• Contact MELAS@adelphivalues.com or call (617) 720-0001 if interested.
• This study is being conducted by Tisento Therapeutics.

   

ARCHIVED STUDIES 

Caregiver Perspective Study- Are you a father to a MELAS patient?
Update: 2/8/24 — This study is now fully recruited. 

• Goal: Conduct a brief online survey with fathers of MELAS patients to better understand their perspective as a caregiver of a MELAS patient
• Why participate? Understanding caregiver burden is an important topic when developing therapeutics, and the father perspective is under-researched. Please encourage any caregivers in your life to consider joining mitoSHARE and participate in this study.
• Participants will receive a $25 gift card for their time upon completion of the study.
• Click here to conduct the survey!
• This study is being conducted by the Wisconsin School of Medicine.

Patient Perspective Survey for Patients with an m.3243A>G Mutation or MELAS diagnosis
Update: 1/24/24 — This study is now fully recruited.

• Goal: Conduct a brief online survey with patients who have a genetically-confirmed 3243 mutation or a MELAS diagnosis to validate key aspects of a clinical development protocol to support a successful and impactful product development
• Why participate? The 3243 mutation and a diagnosis of MELAS are common forms of adult mitochondrial disease for which significant interest exists in developing therapeutics. Lend your voice in developing better clinical trials!
• Open to patients between the ages of 18-65, both male and female
• Confirmed diagnosis of m.3243A>G or MELAS
• This study is being conducted by Trinity Life Sciences.

Patient Perspective Interview for Patients with a mitochondrial disease diagnosis.
Update:  Phase 1 now complete; watch for Phase 2 launch soon

• • Goal: The study aims to identify the symptoms that have the greatest impact on quality-of-life for those with mitochondrial disease.
  • Why participate? This will help inform future research involving individuals with mitochondrial disease.
  • Open to patients in the United States who are at least 18 years of age
  • Contact Mito@chet.rochester.edu if interested.
  • This study is being conducted by the University of Rochester.

Patient/Caregiver Perspective Interview to share your experience with mitochondrial disease.
Update: 11/16/23 — This study is now fully recruited. We’ll adjust this link should it reopen. 

• Goal: To understand the journey and experiences of patients and caregivers of patients living with mitochondrial disease.
• Why participate? Your stories and opinions will help industry partners gain a better understanding of the experiences of living with mitochondrial disease.
• Participants should have two or more of the following symptoms, muscle weakness, difficulty eating, chewing or swallowing, difficulty breathing, loss of functional independence or motor milestones, facial weakness, including ptosis.
• Participants will receive compensation for their time upon completion of the study.