Retinoschisis Clinical Trial
Official title:
Mothers' Experiences With X-linked Retinoschisis Compared to Fathers' Experiences
Verified date | October 2019 |
Source | National Institutes of Health Clinical Center (CC) |
Contact | n/a |
Is FDA regulated | No |
Health authority | |
Study type | Observational |
Background:
X-linked retinoschisis (XLRS) is a genetic condition. It usually presents in boys in
childhood with vision loss. Genetic conditions affect the people who have it and also their
family members. Researchers want to learn if mothers and fathers react differently when a son
gets XLRS. They also want to learn how personality impacts the way people react. This will
help researchers find better ways to support families living with XLRS.
Objective:
To learn more about the experiences of mothers of sons with XLRS compared to fathers of sons
with XLRS. Also to study personality differences between mothers and fathers.
Eligibility:
Parents of a biological son of any age with XLRS who is enrolled in protocol 03-EI-0033
Design:
Participants will be asked questions in person or by phone. This will last 30 90 minutes.
They will be asked about their experience with XLRS and how it has impacted their family. The
interview will be recorded.
Participants will complete a survey about personality traits. It will be anonymous. It can be
completed by mail, email, or fax. It will take about 15 minutes.
Participants data may be shared with others, including those not at NIH, if they agree. Their
data may be stored.
Sponsoring Institution: National Eye Institute
Status | Completed |
Enrollment | 12 |
Est. completion date | October 30, 2019 |
Est. primary completion date | October 30, 2019 |
Accepts healthy volunteers | No |
Gender | All |
Age group | 18 Years and older |
Eligibility |
- INCLUSION CRITERIA: Participants may be eligible to take part in this study if they: Have a biological son of any age with XLRS who is enrolled in XLRS Clinical and Molecular Studies protocol (03-EI-0033). EXCLUSION CRITERIA: -Participants may not be able to take part in this study if they: - Are unable to understand and comply with the procedures of this study. - Cannot communicate in English orally and in writing. |
Country | Name | City | State |
---|---|---|---|
United States | National Institutes of Health Clinical Center | Bethesda | Maryland |
Lead Sponsor | Collaborator |
---|---|
National Eye Institute (NEI) |
United States,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Primary | Description of the experiences of mothers of sons with XLRS compared to fathers of sons with XLRS | Study Completion |
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