Intimacy of Women With Cystic Fibrosis
IFAM
IFAM
Sponsor study identifier
Secondary identifiers
OTHER · ID-RCB
observational
211
1 country
1
Study Start
November 19, 2019
Actual (reported)Primary Completion
May 18, 2021
Actual (reported)Study Completion
May 18, 2021
Actual (reported)The intimate life of patients with cystic fibrosis has not been the subject of specific research, it is even left behind in favor of respiratory, digestive or endocrinological dysfunctions endangering these patients. After 16 years of practice, it is significant that this subject is problematic, painful but difficult to tackle; No doubt just as much on the side of caregivers: this question has never found its way into team exchanges, it seems to be evaded doubtless difficult or too intimate to welcome. These disorders arise from the effects of the disease on the health of the mucous epithelial tissues also located in the genital area. These difficulties are more closely approached by the difficulties of procreation; PMA allows them to get around them, nevertheless making it possible to be a parent, with the residual frustration of a satisfactory sex life: a deaf "addition", adding to many care constraints. It is therefore in terms of sexual health and quality of sexual life that it is desirable to shed light on this aspect of cystic fibrosis in women. Bibliographic research confirms this approach: this subject is not explored, the rare publications concern the vulnerability of the cervix or the difficulty on both sides of tackling this subject.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
May 18, 2021
Actual (reported)Click on a node to explore related trials.
Some registry-reported names shown below are not yet linked in this graph.
Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
November 19, 2019
Actual (reported)January 9, 2020
Actual (reported)January 13, 2020
Actual (reported)May 18, 2021
Actual (reported)May 18, 2021
Actual (reported)Assessment of specific intimate disorders of patients with cystic fibrosis
Passing a questionnaire to assess patients' intimate quality of life. The responses to binary qualitative variables will be described by proportions. The responses to the 5-modality ordinal qualitative variables will be described by the median and the range (minimum and maximum). Continuous quantitative variables will be described by the mean and its standard deviation.
12 months
Women with cystic fibrosis
Preparation of an intimate quality of life questionnaire
Registry-reported names are shown in full. Names without a link have not yet been matched to a Syfrah profile.
Adult patients with cystic fibrosis
Hôpital Lyon Sud - CRCM adultes, médecine interne
Pierre-Bénite, France
Françoise SIMONNET-BISSON
Hospices Civils de Lyon
211 participants (actual enrollment reported by the registry).
First Submitted
January 9, 2020
First Posted
January 13, 2020
Study Start
November 19, 2019
Actual (reported)Human Papilloma Virus Vaccination in Girls With Cystic Fibrosis (VACCIN-HPV-MUC2)
Contact the study team to confirm eligibility.
Primary Completion
May 18, 2021
Actual (reported)Study Completion
May 18, 2021
Actual (reported)Last Updated
June 8, 2022
Record last verified: 2022-06
Download the complete ClinicalTrials.gov record imported by Syfrah, including fields not shown in this page. The registry may contain a newer revision.
Source: ClinicalTrials.gov.
JSON downloads include source attribution and retrieval details alongside the unchanged original record or the separately normalized values.
Source retrieved: