Use of Immunotherapy For Children with Mitochondrial Disease

This survey is being conducted for research purposes. The objective of this survey is to better understand the use of immune therapies in children with mitochondrial disease.

 

You are eligible to participate in this survey if:

(1) you (the responder) are a caregiver of a child with mitochondrial disease

AND

(2) you (the responder) are 18 years of age or older.

 

This survey includes questions about the child with mitochondrial disease and the therapies he/she may or may not be receiving. The purpose of this study is to understand how widespread these therapies are in the community, therefore, we ask you to complete this survey REGARDLESS OF WHETHER OR NOT YOUR CHILD WITH MITOCHONDRIAL DISEASE RECEIVES IMMUNOTHERAPY.

 

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.

 

There are no right or wrong answers to these survey questions.  

 

If you should have questions or concerns about the study, please contact the study team Dr Eliza Gordon-Lipkin, Dr Peter McGuire or Shannon Kruk at ministudy@nih.gov or 301.451.9145