Use of Immunoglobulin Therapy in the Mitochondrial Disease Community

In collaboration with the UMDF, the NIH Metabolism, Infection and Immunity (MINI) Section invites caregivers of children with mitochondrial disease to participate in a survey about the use of immune therapies in children with mitochondrial disease.

Survey Description

As you may know, the therapies that a child with mitochondrial disease receives vary from person to person. Some children with mitochondrial disease receive immune therapies and some do not.

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.

Eligibility

You are eligible to participate in this survey if :

you are a caregiver of a child with mitochondrial disease AND
you are 18 years of age or older.

Survey Responses Privacy

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. NIH and UMDF officials will not know whether or not you respond to the survey. Responses to the survey (or lack thereof) will have no bearing on your relationship with the NIH or the UMDF.

For More Information

Thank you very much for your participation. If you should have questions or concerns about the study, please contact the study team at ministudy@nih.gov or 301.451.9145.

Contacts

Peter McGuire, M.S., M.B.B.Ch.

Investigator
Metabolic Medicine Branch

Eliza Gordon-Lipkin, M.D.

Staff Clinician
Metabolic Medicine Branch

Shannon Kruk, R.N., B.S.

Research Nurse Specialist
Metabolism, Infection and Immunity Section

Last updated: March 3, 2025