An observational study in Nephropathic Cystinosis, sponsored by Hospices Civils de Lyon. Completed at 13 sites in 4 countries. Open to participants aged 2 Years and older. Per ClinicalTrials.gov, last updated 2026-10-22.
Sponsored by Hospices Civils de Lyon · Observational
Among 11 studies in Cystinosis with a site in France — 3 open to participants now, 3 under way, none of them phase 3. Cystinosis · France.
Among the 11 studies in Cystinosis with a site in France, this one is the only one that started in 2019, is one of 4 observational ones, and was the 6th registered.
47 studies on the registry are indexed under Cystinosis; 15 are open to participants now.
This study's enrollment of 42 is below the median of 300 across 19 observational studies indexed under Cystinosis.
Browse Cystinosis studies →3 of the 11 studies in Cystinosis with a site in France are open now, in 1 country. Each count lists the studies.
Of the 10 Cystinosis studies recruiting now, 4 (40%) set no upper age limit and 4 (40%) stop at 75 or younger; 10 take children under 18; 0 take healthy volunteers.
This study: 2 Years and older · all sexes · no healthy volunteers.
The full table on the hub →11 studies; the count open now beside each. This study's row is marked.
First in 2008; this study’s year is marked. 1 started in 2019.
Median enrollment 41 across the 7 interventional studies, 146 across the 4 observational. Of the 8 that completed or were terminated, 3 (38%) have results posted.
4 of 11 have an industry lead sponsor. The 6 most frequent:
Hospices Civils de Lyon is the lead sponsor of 1,866 studies on the registry; 448 are open to participants now.
Hospices Civils de Lyon has 3 studies filed under Cystinosis — fewer than ten, so there is no comparison to draw.
1 of the studies in Cystinosis with a site in France that are under way reach primary completion within a year, 0 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT05901077Institut National de la Santé Et de la Recherche Médicale, FranceEuropean Cystinosis Cohort | 2027-04 |
Among the 11 studies in Cystinosis with a site in France, from their registry updates:
Nephropathic Cystinosis (NC) is an orphan inherited autosomal recessive disease characterised as a generalized lysosomal storage disease due to a deficiency of the cystine lysosomal transport protein, cystinosin.
Patients with NC usually receive cysteamine. Bone impairment was recently recognized as a late complication of NC, occurring at adolescence or early adulthood. Even though the exact underlying pathophysiology is unclear, at least six hypotheses are discussed, and mainly cysteamine toxicity and/or direct bone effect of the Cystinosin (CTNS) mutation. Because of the potential dramatic impact on quality of life of this novel complication, research should aim to better understand bone disease in NC.
The primary objective of this study is to evaluate the action of cysteamine on osteoclastic differentiation and resorption activity of NC patients, depending on the underlying genotype. The Secondary objective is to describe the clinical bone status of NC patients depending on their underlying genotype.
Patients with nephropathic cystinosis (NC)
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
nephropathic cystinosis patients receiving cysteamine. The blood samples of the group will be used to evaluate the action of cysteamine on osteoclastic differentiation and resorption activity of NC patients, depending on the underlying genotype.
Other: Blood sampling
25 mL blood sample will be collected on citrate tubes for osteoclastic analysis.
Number of positive Tartrate-resistant acid phosphatase (TRAP) cells
Number of positive TRAP cells will be assessed at the end of osteoclast differentiation from circulating monocytes
Time frame: 1 day
Ran from Apr 2019 to primary completion in Dec 2025, 80 months.
Since we started tracking on Sep 25, 2026, the dates moved once, on Oct 22, 2026: primary completion Oct 2026 → Dec 2025 and completion Oct 2026 → Dec 2025.
Earlier changes are on the record history on ClinicalTrials.gov ↗
How these figures are worked out, and which studies are left out of them.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
This study is completed, as verified in Oct 2026. You cannot join it, but the record below documents what was studied.
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