Mito Study Roundup: Studies Available for Patients, Caregivers

Updated 6/4/24

We all want more and better therapies for mitochondrial disease, and to achieve this goal we need patients who are willing to help by participating in clinical research even when no drug is being tested. Please consider engaging in one or more of the non-drug clinical research opportunities below. If you have questions about any of these studies or are unsure of your diagnosis, feel free to contact UMDF’s science team or speak with your healthcare provider. We are here to help!

Patient/Caregiver Perspective Interview for Patients living with and Caregivers supporting a person with a primary mitochondrial myopathy diagnosis.

• • 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 and caregivers in the United States who are at least 18 years of age

Contact Fieldwork by calling 847-983-7887 or emailing Myopathyproject@fieldwork.com and mention Project Code 6057NRC24 if interested.

 NIH Metabolism, Infection and Immunity (MINI) Study:

 Goal: Conduct interviews with caregivers of children with mitochondrial disease to participate in a survey about the use of immune therapies in children with mitochondrial disease. The purpose of this study is to understand how widespread these therapies are in the community, why some people are receiving them and how they may or may not benefit their disease. We ask you to complete this survey regardless of whether or not your child with mitochondrial disease is receiving immunotherapy.

• You are eligible to participate in this survey if:
  • You are a caregiver of a child (0-17) with mitochondrial disease AND
  • You are 18 years of age or older.
• Responding to this survey is entirely voluntary and takes approximately 15 minutes.Responses are anonymous and no individual identifying information will be requested. Aggregate survey data will be shared within the NIH and published. No individual data will be shared. Only the study team will have access to individual answers, without any identifiers. 
• Please visit: https://www.surveymonkey.com/r/UMDF-eblast to participate in this important survey. 
• If you should have questions or concerns about the study, please contact the NIH study team at ministudy@nih.govor 301.451.9145.