Experiences of Genetics Patients With Visible Abnormalities Who Facilitate Teaching in Genetics Clinics

NCT00341718 | Completed

• 2 other identifiers: 99990613006-HG-N130
• Study Type: observational
• Target: 30
• Locations: 1 country
• Sites: 1

Brief Summary

This study will describe the experience of patients with visible physical abnormalities in the genetics clinic when they are involved in teaching others about their condition. Information from this study may be used to enhance educational experiences in genetics clinics. Patients 18 years of age and older with a visible physical anomaly who have been seen by a genetics professional in the past 5 years may be eligible for this study. In a tape-recorded telephone interview, patients are asked about the following:

• Their experiences when visiting the genetics clinic
• The circumstances under which they have been approached to participate in teaching others
• Their perspective on specific teaching behaviors used in genetic consultations, and how this perspective is affected by their perception of their own visible difference
• The benefits and downsides of being involved in teaching others
• The circumstances under which they feel comfortable being approached by genetics providers to help teach others about their condition
• The conditions or circumstances that make some individual teaching experiences better or worse than others

Conditions

Learning

Keywords

Interview; Genetics

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Seen in a genetics clinic or by a genetics professional in the past 5 years.
• Self-reported obvious physical difference or deformity.
• English speaking.

You may not qualify if:

• Younger than 18 years.
• Non-visible or absent physical difference of deformity.
• Cognitively-impaired or incompetent.

Sponsors & Collaborators

• National Human Genome Research Institute (NHGRI): lead

Study Sites (1)

Johns Hopkins University

Baltimore, Maryland, 21205, United States

Location

Related Publications (1)

• Wright HJ. Patients' attitudes to medical students in general practice. Br Med J. 1974 Mar 2;1(5904):372-6. doi: 10.1136/bmj.1.5904.372.

  PMID: 4819176 BACKGROUND

Study Design

• Study Type: observational
• Sponsor Type: NIH

Study Record Dates

• First Submitted: June 19, 2006
• First Posted: June 21, 2006
• Study Start: March 29, 2006
• Study Completion: March 31, 2007
• Last Updated: July 2, 2017

Record last verified: 2007-03-31

Locations

US (1)