LearningNCT00341718
Experiences of Genetics Patients With Visible Abnormalities Who Facilitate Teaching in Genetics Clinics
An observational study of Learning, run by National Human Genome Research Institute (NHGRI) at 1 site in United States.
Trial 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. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Learning
- How many people
- 30 participants
- Where
- 1 siteUnited States
- Study dates
- 29 Mar 2006to 31 Mar 2007
- Phase
- Observational
- Are there results?
- None posted in the registry
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Who may be able to join
- Seen in a genetics clinic or by a genetics professional in the past 5 years.
- Self-reported obvious physical difference or deformity.
- English speaking.
Who cannot join
- Younger than 18 years.
- Non-visible or absent physical difference of deformity.
- Cognitively-impaired or incompetent.
Trial locations and contacts
1 site in 1 country.
About this study
Official title: The Experiences of Genetics Patients With Visible Differences Who Facilitate Teaching in Genetics Clinics
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.
Read more
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
Read the detailed description
It is common for genetics patients to facilitate teaching of others during the course of their genetics exam. Patient response to serving as a teaching case has been studied only on a limited extent. This study proposes to qualitatively explore the ways in which taking on a teaching role in a genetics clinic is experienced by patients with visible differences.
Qualitative telephone interviews with approximately 30 genetics patients with visible differences will be conducted. The interviews will be semi-structured and an interview guide will be loosely followed. Interviews will be recorded and transcripts of the interviews will be coded for analysis. A typology of common themes will be compiled and reported. Information collected through these interviews will improve understanding of the phenomenon of patients in educator roles, relate experiences to patient expectations and will fill a gap in the published literature. It is additionally hoped that results of this study may inform the development of new recommendations to enhance educational experiences in genetics clinics.
- Conditions
- Learning
- Keywords
- Interview, Genetics
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted21 Jun 2006 (estimated)
- Study start29 Mar 2006
- Study completion31 Mar 2007
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (1)Papers the sponsor has linked to this study.
- Other trials for LearningStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Enrolment
- 30 participants
Sponsor and investigators
- Lead sponsor
- National Human Genome Research Institute (NHGRI)
- Sponsor type
- US National Institutes of Health
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT00341718
- Sponsor's protocol ID
- 999906130
- Other IDs
- 06-HG-N130
- Status last verified
- 31 Mar 2007
- First submitted
- 19 Jun 2006
- Last updated
- 2 Jul 2017
- Results posted
- No
Publications
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.
PubMed 4819176
Study at a glance
From the registry record, last updated by the sponsor on 2 Jul 2017. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- The Experiences of Genetics Patients With Visible Differences Who Facilitate Teaching in Genetics Clinics
- ClinicalTrials.gov ID
- NCT00341718
- Acronym / sponsor ID
- 999906130
- Conditions
- Learning
- Keywords
- Interview, Genetics
- Study type
- Observational
- Recruitment status
- Completed
- Enrolment
- 30 participants
- Lead sponsor
- National Human Genome Research Institute (NHGRI)US National Institutes of Health
- Study start
- 29 Mar 2006
- Study completion
- 31 Mar 2007
- First posted
- 21 Jun 2006 (estimated)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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
Detailed description
It is common for genetics patients to facilitate teaching of others during the course of their genetics exam. Patient response to serving as a teaching case has been studied only on a limited extent. This study proposes to qualitatively explore the ways in which taking on a teaching role in a genetics clinic is experienced by patients with visible differences.
Qualitative telephone interviews with approximately 30 genetics patients with visible differences will be conducted. The interviews will be semi-structured and an interview guide will be loosely followed. Interviews will be recorded and transcripts of the interviews will be coded for analysis. A typology of common themes will be compiled and reported. Information collected through these interviews will improve understanding of the phenomenon of patients in educator roles, relate experiences to patient expectations and will fill a gap in the published literature. It is additionally hoped that results of this study may inform the development of new recommendations to enhance educational experiences in genetics clinics.
Study design
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (3 listed)
Key exclusion criteria (3 listed)
- Younger than 18 years.
- Non-visible or absent physical difference of deformity.
- Cognitively-impaired or incompetent.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Not reported in the source record.
Results and safety
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 2 Jul 2017.
- Background: PubMed 4819176Wright 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.
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Learning, run by National Human Genome Research Institute (NHGRI) at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 2 Jul 2017. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
The study is completed, but results are not available in the source record. That does not mean the treatment did or did not work.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT00341718, which also lists 1 linked publication.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 2 Jul 2017.