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PRISM and CFN for PMD

PRISM and CFN for PMD

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If you are interested in participating in the study or want to learn more, please contact: Contact us
This study is now recruiting. Learn more about enrolling here.

Description

Primary mitochondrial diseases (PMD) are a group of energy deficiency disorders that are typically progressive and range in onset and severity. Individuals with PMD experience a variety of clinical symptoms that not only affect their physical health but significantly impact their daily life.
The goal of this study is to find the best way to help adults with PMD deal with the stress of their condition, and to help them be better able to “bounce back,” or be resilient. In order to do this, we are going to test two interventions. The first is called Promoting Resilience in Stress Management (PRISM). The second is called clinical-focused narrative (CFN) intervention.
The study period will last for about one month and will consist of five online visits and a one-time online discussion group.

Eligibility and criteria


IRB Number:
22-020222
Eligible age range:
18 years - 99 years
Clinical trial phase:
Pilot
Official title:
Harnessing Resilience in Adults with Primary Mitochondrial Disease: A Pilot Study Investigating the Feasibility of the Promoting Resilience in Stress Management (PRISM) and Clinical-Focused Narrative (CFN) Interventions

What to expect

The study will require five virtual study visits. Each online visit will last for about 30-60 minutes. During these visits, participants will receive one of the two study interventions. Participants will also be sent several surveys to complete. The sixth online visit will be a discussion group that happens a couple months after the intervention is completed.
Smiling CHOP patient holding shopping bag

We need families like you

Your time and participation make a difference in supporting the work of the Research Institute and children in our community. Learn more about opportunities to participate in our research.

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