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Life with chronic kidney disease for women of childbearing age, without dialysis or transplant

Explores how women of childbearing age experience chronic kidney disease through interviews.

Key facts

Who runs it
University Hospital, Caen
Where
Caen, FranceSee the site
Trial code
Registry title
Living With Chronic Kidney Disease Without Renal Replacement Therapy: Experience of Women of Childbearing Age
Status
Recruiting
People taking part
12 people, planned
Started
30 Jun 2026
Expected to end
Aug 2027
Type of study
Observational, 2 groups
Record updated
22 July 2026

Who can take part

AI summary

From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.

The trial is looking for women with chronic kidney disease who are not on dialysis and have not had a kidney transplant. They share their experience of living with the disease.

Age
18 years or older
Sex
Women only (cisgender, not menopausal)
Disease stage
Chronic kidney disease, not on dialysis and not transplanted
Earlier treatment
Must not be on dialysis or have a kidney transplant

Main reasons for not taking part

  • Not covered by a national health insurance system
  • Under legal protection (guardianship, curatorship or legal safeguard)
  • Not enough French, spoken and written, to take part
  • Cannot attend in-person visits at the Centre Universitaire des Maladies Rénales (CUMR)
  • Other health conditions that may interfere with the study aims, for example conditions affecting fertility

The registry criteria, word for word

Show all 9 criteriaShow less

Who can take part

  • Women aged ≥ 18 years, cisgender, and not menopausal
  • Patients under follow-up at Caen University Hospital for chronic kidney disease
  • Patients not receiving renal replacement therapy (i.e., not on dialysis or kidney transplantation)
  • Patients who have been informed about the study and provided consent to participate

Who cannot take part

  • Patients with comorbid conditions other than chronic kidney disease that may interfere with the study objectives (e.g. conditions affecting fertility)
  • Patients not covered by a national health insurance system
  • Patients under legal protection (guardianship, curatorship, or legal safeguard)
  • Patients with insufficient proficiency in French (spoken and written) to understand study information, participate in the interview, and complete the quality-of-life questionnaire
  • Patients unable to attend in-person visits at the Centre Universitaire des Maladies Rénales (CUMR)

Where in France

  • Centre Universitaire des Maladies Rénales (CUMR), Caen University HospitalCaen, FranceContact: Antoine Lanot, MDTaking people

About the trial

What the trial wants to find out

Chronic kidney disease (CKD) affects approximately 13% of the global population. This condition is often associated with comorbidities such as diabetes and hypertension. Although its prevalence increases with age, CKD can also affect younger individuals, particularly women of childbearing age. From the early stages, CKD may lead to female-specific clinical manifestations, such as reduced fertility, occurring at a key period of life. These clinical aspects may also be accompanied by concerns about the transmission of hereditary nephropathy and may generate a significant psychological burden. However, current knowledge regarding the lived experience of young women of childbearing age with CKD remains limited, particularly in France.

Read full original descriptionShow less

The main objective of this study is to explore the lived experience of young women with CKD who are not receiving kidney replacement therapy. In this study, lived experience refers to how participants perceive, make sense of, and integrate CKD into their daily lives and future life plans. Twelve participants with CKD, not transplanted and not on dialysis, will be recruited and divided into two groups: six women with genetically determined CKD and six women with non-genetic CKD. This grouping is justified by the fact that the etiology of the disease may profoundly influence lived experience. Genetic CKD is often associated with concerns regarding familial transmission and early medical follow-up, whereas non-genetic CKD may be perceived as an acquired condition occurring later in life. Data will be collected through semi-structured interviews based on a tailored interview guide. Transcripts will be analysed using Interpretative Phenomenological Analysis (IPA), which allows exploration of the meaning that each participant attributes to her experience.

This is an exploratory pilot study aiming to document, for the first time in France, the lived experience of young women with CKD, with a secondary focus on the potential impact of genetic versus non-genetic etiology. Particular attention will be given to themes related to sexual and reproductive health. The findings will contribute to a better understanding of this understudied population and may ultimately improve their clinical care.

The 2 groups in the trial

  • Genetic CKD group

    Women of childbearing age diagnosed with chronic kidney disease (CKD) of confirmed or suspected genetic etiology, not receiving renal replacement therapy (i.e., not on dialysis orkidney transplantation).

  • Non-genetic CKD group

    Women of childbearing age diagnosed with chronic kidney disease (CKD) of non-genetic etiology, not receiving renal replacement therapy (i.e., not on dialysis or kidney transplantation).

Questions to ask the study team

  1. How often do I need to come in, and for how long each time?
  2. Are travel costs paid?
  3. Can I keep my own doctor?
  4. What happens if I want to stop?

Contact the study team: see the registry record → Contacts and Locations

Print a page for my doctor

Data and sources

Registry record
Listed on ClinicalTrials.gov.
Official title
Living With Chronic Kidney Disease Without Renal Replacement Therapy: Experience of Women of Childbearing Age
Plain-language title
Life with chronic kidney disease for women of childbearing age, without dialysis or transplantGenerated from the registry record. The registry title is the official one.
AI summary
From the trial's eligibility criteria. Read by machine on 13 November 2026.
Record updated
22 July 2026