Quality of Lifeof Children and Youth With Spina Bifida and Their Caregivers

Overview

About this study

The purpose of this study is to collate information from pediatric spina bifida patients and their parents or guardians in regard to which clinical services and therapies would be most relevant and helpful to this patient population.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:  

  • Children/youth with spina bifida ages 8-22 and their caregivers.

Exclusion Criteria: 

  • Non English speaking/reading.
  • Individuals who are 18-22 years old who do not have decision making capacity.

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 2/27/2025. Questions regarding updates should be directed to the study team contact.
 

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Joline Brandenburg, M.D.

Open for enrollment

Contact information:

Tyson Scrabeck CCRP

(507) 538-1016

Scrabeck.Tyson@mayo.edu

More information

Publications

Publications are currently not available