NCT00485082

Brief Summary

This study will examine the experience of disclosing a cystic fibrosis (CF) diagnosis to a dating partner. CF has implications for potential life partners (issues of fertility, decreased life span and an increasing need for medical management with age) that may make disclosure particularly sensitive. An understanding of the disclosure process may provide insight into ways health care practitioners can support their patients during this process. People between 21 and 35 years of age with CF who have been in at least one dating relationship may be eligible for this study. Participants are interviewed by telephone about their experiences living with cystic fibrosis and telling dating partners about their diagnosis. The interview includes questions about:

  • Past experiences disclosing their CF diagnosis to a dating partner
  • What information was disclosed versus what was not disclosed
  • Why certain information was disclosed or not disclosed
  • Positive and negative implications of the disclosure or non-disclosure The interview lasts about 60 minutes and is tape-recorded for later review and analysis.

Trial Health

80
On Track

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Enrollment
50

participants targeted

Target at P25-P50 for all trials

Geographic Reach
1 country

1 active site

Status
completed

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

Study Start

First participant enrolled

June 5, 2007

Completed
4 days until next milestone

First Submitted

Initial submission to the registry

June 9, 2007

Completed
3 days until next milestone

First Posted

Study publicly available on registry

June 12, 2007

Completed
9 months until next milestone

Primary Completion

Last participant's last visit for primary outcome

March 21, 2008

Completed
Last Updated

July 2, 2017

Status Verified

August 25, 2009

Enrollment Period

10 months

First QC Date

June 9, 2007

Last Update Submit

June 30, 2017

Conditions

Keywords

Cystic FibrosisDisclosureDating PartnerPhone Interview

Eligibility Criteria

Age21 Years - 35 Years
Sexall
Healthy VolunteersNo
Age GroupsAdult (18-64)

You may qualify if:

  • Self-reported to have been diagnosed with cystic fibrosis.
  • Self-reported to be in or have been in at least one dating relationship
  • English speaking.

You may not qualify if:

  • Younger than 21 years of age; Older than 35 years of age.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (1)

National Human Genome Research Institute (NHGRI), 9000 Rockville Pike

Bethesda, Maryland, 20892, United States

Location

Related Publications (3)

  • Holt R, Court P, Vedhara K, Nott KH, Holmes J, Snow MH. The role of disclosure in coping with HIV infection. AIDS Care. 1998 Feb;10(1):49-60. doi: 10.1080/09540129850124578.

    PMID: 9536201BACKGROUND
  • Kalichman SC, DiMarco M, Austin J, Luke W, DiFonzo K. Stress, social support, and HIV-status disclosure to family and friends among HIV-positive men and women. J Behav Med. 2003 Aug;26(4):315-32. doi: 10.1023/a:1024252926930.

    PMID: 12921006BACKGROUND
  • Joachim G, Acorn S. Life with a rare chronic disease: the scleroderma experience. J Adv Nurs. 2003 Jun;42(6):598-606. doi: 10.1046/j.1365-2648.2003.02663.x.

    PMID: 12787233BACKGROUND

MeSH Terms

Conditions

Cystic Fibrosis

Condition Hierarchy (Ancestors)

Pancreatic DiseasesDigestive System DiseasesLung DiseasesRespiratory Tract DiseasesGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesInfant, Newborn, Diseases

Study Design

Study Type
observational
Time Perspective
RETROSPECTIVE
Sponsor Type
NIH

Study Record Dates

First Submitted

June 9, 2007

First Posted

June 12, 2007

Study Start

June 5, 2007

Primary Completion

March 21, 2008

Last Updated

July 2, 2017

Record last verified: 2009-08-25

Locations