Clinical and Demographic Characteristics of Adult p Atients With NEurofibromatosis in RUSsia
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Sponsored by AstraZeneca (industry) · AZN — their whole pipeline →.
Phase
—
Status
Recruiting
Study type
Observational
Enrollment
200estimated
Sites
16
Country
Russia
Every value on this page is a field the sponsor filed with ClinicalTrials.gov, reproduced. Dates are their own estimates, revised as a study runs, unless the registry marks them actual. sources →
Source: ClinicalTrials.gov, retrieved 2026-08-19
Dates
each axis at the precision it was filed, with the registry's own basis| Date | Filed | Basis | What it is |
|---|---|---|---|
| Start | 2025-06-06 | actual | When the study began enrolling |
| Primary completion | 2028-03-31 | estimated | The date the last participant is measured for the primary outcome — the readout window |
| Study completion | 2028-03-31 | estimated | The whole study's end, after follow-up |
| First posted | 2025-07-28 | actual | When this record first appeared on the registry |
| Results posted | — | When the sponsor posted results to the registry | |
| Record updated | 2026-07-20 | actual | The sponsor's own last edit to this record — every projection above is as current as this date |
What it studies
Condition
- Neurofibromatosis
Primary outcomes
what the primary-completion date above is the date OFAge (full years) at the inclusion into the study (date of Visit 1)
measured Day 0 (Visit 1)
Age (full years) at the primary NF1 diagnosis
measured Day 0 (Visit 1)
Proportion of men and women
measured Day 0 (Visit 1)
Body mass index (BMI), kg/m2;
measured Day 0 (Visit 1)
Body surface area (BSA), m2
measured Day 0 (Visit 1)
Proportion of patients with each educational status (higher, secondary special, secondary general);
measured Day 0 (Visit 1)
Proportion of patients from each residential region (federal district of Russia);
measured Day 0 (Visit 1)
Other than PN specific NF1 symptoms and manifestations
measured Day 0 (Visit 1)
NF1-associated complications
measured Day 0 (Visit 1)
Non-specific NF1-comorbidities, coded by MedDRA system organ class (SOC) and preferred term (PT)
measured Day 0 (Visit 1)
Proportion of patients with various specific and non-specific NF1-comorbidities
measured Day 0 (Visit 1)
Proportion of patients with various PN-associated symptoms
measured Day 0 (Visit 1)
Proportion of patients with various ECOG score
measured Day 0 (Visit 1)
Proportion of patients with various PN locations
measured Day 0 (Visit 1)
PN volume (established by MRI)
measured Day 0 (Visit 1)
Duration of PN symptoms persistence before inclusion into the study
measured Day 0 (Visit 1)
Duration of PN diagnosis before inclusion into the study
measured Day 0 (Visit 1)
Medical history of PN
measured Day 0 (Visit 1)
Previous physical, instrumental and laboratory examination results
measured Day 0 (Visit 1)
Amount and duration of hospitalizations associated with NF1 according to the investigator's opinion, collected from the medical history since the date of NF1 diagnosis
measured Day 0 (Visit 1)
Degree of disability at baseline
measured Day 0 (Visit 1)
Changing in disability degree during the study
measured Day 0 (Visit 1)
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