Last reviewed · How we verify
NCT07497581: FAIR
A Longitudinal Study on Family Adaptation and Relationship Dynamics in Pediatric Rare Diseases
trial in Rare Diseases in 240 participants. Not yet recruiting.
1 April 2031
Quick facts
| Lead sponsor | Markus A. Landolt |
|---|---|
| Status | Not yet recruiting |
| Study type | OBSERVATIONAL |
| Enrollment | 240 |
| Start date | 1 April 2026 |
| Primary completion | 1 April 2031 |
| Estimated completion | 1 April 2031 |
| Sites | 1 location across Switzerland |
Conditions studied
- Rare Diseases — all drugs for Rare Diseases →
Sponsor
Markus A. Landolt
Who can join
Adults 1 to 18, any sex, with Rare Diseases. Patients with the condition only — healthy volunteers not accepted.
Sponsor's own description
Rare diseases in children can affect not only the child's health but also the well-being and relationships within the entire family. Parents often experience stress, uncertainty, and emotional strain, which may in turn influence their child's mental health and quality of life. However, little is known about how families adapt over time to living with a rare disease or how daily experiences and family interactions shape this process. This study aims to better understand how children with rare diseases and their caregivers adjust psychologically and emotionally over time. It will examine how factors such as parental stress, uncertainty, coping strategies, and family communication are linked to the mental health and quality of life of both children and parents. The study will include children and adolescents (ages 1-18) with a diagnosed rare disease and their caregivers. Participants will complete online questionnaires at four time points over one year. A subgroup of families will also take part in a two-week smartphone-based assessment, where parents report their daily experiences, such as stress, emotions, and worries, several times per day. Some children and adolescents will additionally participate in interviews to share their own perspectives. The main outcomes of interest are the child's mental health and quality of life. The study will also assess parental well-being and family functioning to understand how these factors influence each other over time. By combining long-term and daily data, this study will provide a detailed picture of how families cope with rare diseases in everyday life. The findings may help improve psychological support and guide the development of targeted interventions for families affected by rare pediatric conditions.
Publications & conference data
No peer-reviewed publications indexed yet for this trial.
Verify or expand the search:
- PubMed search for NCT07497581
- Europe PMC full search
- ASCO Meeting Library
- ESMO Meeting Library
- bioRxiv preprints
- medRxiv preprints
- Google Scholar
Related trials
Other recruiting trials for Rare Diseases
Currently open trials in the same condition.
- NCT06595940 — Genetic Analysis of Uncommon Disease Presentations in Non-US Populations · recruiting
- NCT07247279 — Epidemiological Study of Treatment Approaches in AChR-Antibody Positive Generalized Myasthenia Gravis in Russia · recruiting
- NCT07102966 — Genetic Study to Determine the Cause of Birth Defects in Newborns in Texas · NA · recruiting
- NCT06856902 — BEhavioral and Adherence Model for Improving Quality, Health Outcomes and Cost-Effectiveness of healthcaRe · NA · recruiting
- NCT06926127 — Genomic Profiling of Genetic and Rare Diseases · NA · recruiting
Verify against primary sources
- ClinicalTrials.gov — authoritative US registry record
- WHO ICTRP — international registry index
- EU Clinical Trials Register
- Sponsor press releases (Google)
- Trial protocol + status: ClinicalTrials.gov NCT07497581 (US National Library of Medicine, public domain)
- Drug + disease cross-links: matched in real time against Drug Landscape's normalised drug + company + condition tables
- Sponsor: as reported to ClinicalTrials.gov by Markus A. Landolt
- Last refreshed: 27 March 2026
Drug Landscape aggregates and links these public records for informational use only. Always verify against the primary source before clinical or regulatory decisions. Canonical URL: https://druglandscape.com/trial/NCT07497581.
Primary sources · FDA · ClinicalTrials.gov · EMA · SEC EDGAR · ChEMBL · Wikidata · full sourcing