Mothers Experiences With X-linked Retinoschisis Compared to Fathers Experiences

NCT03354403 | Completed

• 2 other identifiers: 18001618-EI-0016
• Study Type: observational
• Target: 12
• Locations: 1 country
• Sites: 1

Brief Summary

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

Conditions

Retinoschisis; X-Linked

Keywords

XLRS; RS1; Carrier

Outcome Measures

Primary Outcomes (1)

• Description of the experiences of mothers of sons with XLRS compared to fathers of sons with XLRS

  Study Completion

Study Arms (1)

Patients

Up to 50 mothers of sons of all ages diagnosed with XLRS are eligible to participate in this study. Up to 50 fathers of sons of all ages with XLRS are also eligible to participate and will serve as a comparison group.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Up to 50 mothers of sons of all ages diagnosed with XLRS are eligible to participate in this study. Up to 50 fathers of sons of all ages with XLRS are also eligible to participate and will serve as a comparison group.

You may qualify if:

• 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).

You may not qualify if:

• 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.

Sponsors & Collaborators

• National Eye Institute (NEI): lead

Study Sites (1)

National Institutes of Health Clinical Center

Bethesda, Maryland, 20892, United States

Location

MeSH Terms

Conditions

Retinoschisis

Condition Hierarchy (Ancestors)

Retinal Degeneration; Retinal Diseases; Eye Diseases

Study Officials

• Amy E Turriff

  National Eye Institute (NEI)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: NIH
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: November 25, 2017
• First Posted: November 28, 2017
• Study Start: December 1, 2017
• Primary Completion: October 30, 2019
• Study Completion: October 30, 2019
• Last Updated: November 1, 2019

Record last verified: 2019-10

Locations

US (1)