A Study to Evaluate Family Experiences and Advice on Diagnosis and Support (FEADS)

Overview

About this study

The purpose of this study is to survey individuals and families on their experience of receiving a diagnosis of a sex chromosome abnormality and any follow-up services or support they received, and to solicit information on suggested best practices for the return of a diagnosis and subsequent support services in clinical and social care.

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:

Male or female, 16 years of age or older.
Has access to the internet
Is able to read and write English
Has either:
- been diagnosed with a sex chromosome aneuploidy (abnormality); or
- is the parent or primary guardian of an individual with a sex chromosome aneuploidy.

Exclusion Criteria:

Male or female, under 16 years of age.
Has no internet access.
Is a non-English speaker.
Has not either:
- been diagnosed with a sex chromosome abnormality (aneuploidy); or
- is the parent or primary guardian of an individual with a sex chromosome aneuploidy.

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
Rochester, Minn. Mayo Clinic principal investigator Megan Allyse, Ph.D.	Closed for enrollment

Mayo Clinic Location

Status

Rochester, Minn.

Mayo Clinic principal investigator

Megan Allyse, Ph.D.

Closed for enrollment

More information

Publications

Publications are currently not available

Clinical Trials