Clinical Research Pavilion

Patients, caregivers, and healthy controls will once again have the opportunity to participate in research at UMDF’s Clinical Research Pavilion at Mitochondrial Medicine Conference this year, June 17-20, 2026, in Orlando, FL.

While the full lineup of studies is still under development, here’s an early look:

• mitoSHARE Patient Registry
  Learn more about mitoSHARE and signup, complete surveys, and enroll in upcoming Natural History Studies or Clinical Research Studies.

• mitoSHARE Biorepository
  If you have a genetically confirmed mitochondrial disease (genetic curation required) and you have not yet donated samples; you are eligible to participate.

• Motor Skills Assessment with The Children’s Hospital of Philadelphia
  This study is open to patients and caregivers. If you participated last year, you are encouraged to participate again this year. Study includes: 6-minute walk, fine motor skills, functional PT tests, AI Insoles and more.

• pGz modified Jogging Device Study with The Children’s Hospital of Philadelphia
  This study is open to NEW patients or caregivers who did not complete testing last year. Study includes EKG and Pulse oximeter, passive motion device, doppler ultrasound, pupillometry and optional blood draws.

• MSeqDR (Mitochondrial Disease Sequence Data Resource) Enrollment
  Learn more on how you can share your genomic data with researchers all over the world. If you are NOT attending the conference, and are interested in this opportunity, please email registry@umdf.org or reach out to CHOP at MSeqDR@chop.edu.

• Metabolism, Infection, and Immunity (MINI) Study – NIH
  Why can illnesses hit harder, recovery take longer, or symptoms worsen even without a clear trigger? In mitochondrial disease, the immune system may be out of balance—overactive in its early response but less effective in its more specialized defenses. This can affect responses to infection and inflammation, and may also play a role in disease progression even when no infection is present. Open to individuals across the immunity spectrum- even those without known immune issues. Includes comprehensive immune evaluation and specialty consults. Travel, lodging, and meals provided. Remote option available. Contact: ministudy@mail.nih.gov

To kickstart your pavilion inclusion, join mitoSHARE today.

Please reach out to registry@umdf.org to learn more about the studies, and to hold your spot for 2026.