An observational study in X-linked Hypophosphatemia (XLH), sponsored by Medialis Ltd.. Completed at 1 site in United Kingdom. Open to participants aged 28 Years and older. Per ClinicalTrials.gov, last updated 2023-10-23.
Sponsored by Medialis Ltd. · Observational
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Among 10 studies in Familial Hypophosphatemic Rickets with a site in United Kingdom — 2 open to participants now, 2 under way, none of them phase 3. Familial Hypophosphatemic Rickets · United Kingdom.
Among the 10 studies in Familial Hypophosphatemic Rickets with a site in United Kingdom, this one is one of 2 that started in 2019, is one of 5 observational ones, and was the 6th registered.
49 studies on the registry are indexed under Familial Hypophosphatemic Rickets; 8 are open to participants now.
Browse Familial Hypophosphatemic Rickets studies →2 of the 10 studies in Familial Hypophosphatemic Rickets with a site in United Kingdom are open now. Recruiting first, the newest first:
University of Nottingham · Sites in United Kingdom
Ages 2–18
Kyowa Kirin Pharmaceutical Development Ltd · Sites in United Kingdom, Belgium, Bulgaria and 17 more countries
A study can be open while its sites in United Kingdom have not opened yet or have stopped. Only those recruiting at a site in United Kingdom →
Of the 4 Familial Hypophosphatemic Rickets studies recruiting now, 2 set no upper age limit and 2 stop at 75 or younger; 3 take children under 18; 1 takes healthy volunteers.
This study: 28 Years and older · all sexes.
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10 studies; the count open now beside each. This study's row is marked.
A study in two phases is counted once above. Listed by phase, each with its combined phases: Phase 1 1 · Phase 2 2 · Phase 3 3
First in 2014; this study’s year is marked. 2 started in 2019.
This study's enrollment of 11 is below the median of 50 across 16 observational studies indexed under Familial Hypophosphatemic Rickets.
Median enrollment 52 across the 5 interventional studies, 32 across the 5 observational. Of the 8 that completed or were terminated, 3 (38%) have results posted.
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9 of 10 have an industry lead sponsor. The 4 most frequent:
Medialis Ltd. is the lead sponsor of 4 studies on the registry; 3 are open to participants now.
Medialis Ltd. has 1 study filed under Familial Hypophosphatemic Rickets — fewer than ten, so there is no comparison to draw.
None of the studies under way reaches primary completion within a year.
Among the 10 studies in Familial Hypophosphatemic Rickets with a site in United Kingdom, from their registry updates:
Nothing recorded among them since 2026-09-25.
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There is limited empirical data documenting disease progression and impact on quality of life for patients with X-linked hypophosphatemia (XLH). This study seeks to investigate the impact of XLH in adults living in the UK retrospectively and prospectively over a 12 month period, using qualitative interviews, SEIQoL-DW, EQ-5D-5L, SF36 quality of life tools.
XLH is a rare, genetic, chronically debilitating and deforming condition (www.nice.org.uk/guidance/HST8). XLH is characterised by renal phosphate wasting, hypophosphatemia and defective bone mineralisation. The incidence of XLH is reported to be between 1:20,000 and 1:25,000 live births. In the UK, it is estimated that there are around 250 paediatric XLH patients and around 2,500 adult XLH patients (Delmestri,et al [Unpublished report]2018). The clinical phenotype of XLH is varied amongst patients, even among affected members of the same family. This can range from no signs or symptoms, slow growth in children, short stature, bone abnormalities that can affect movement and result in pain, bowed legs and knocked knees (where lower legs are positioned at an outward angle), tooth abscesses and excessive dental caries and hearing loss (adult patients only).
This study will recruit 36 adults living with XLH, who are aged 28 years or over and living in the UK. The study will be advertised by the Sponsor and funder Medialis Ltd and via the patient organisation Metabolic Support UK. All study activities will take place via tele-visits and online questionnaires. The study will last approximately 2 years, allowing for one-year recruitment and a further 12 months to conduct all study visits.
Adults with XLH
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.
Participant has a diagnosis of XLH
Exclusion Criteria:
Participant does not have a diagnosis of XLH
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
None - Observational study
Schedule for the Evaluation of Individual Quality of Life Direct Weight (SEIQoL-DW)
Change in quality of life
Time frame: 12 months
Disease progression in adults living with XLH
Qualitative investigation of disease progression
Time frame: 12 months
EQ- 5D-5L
Quality of life measure
Time frame: 12 months
SF36
Quality of life measure
Time frame: 12 months
Plan to share: No
Ran from Jul 2019 to primary completion in Feb 2021, 19 months.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in Oct 2023. You cannot join it, but the record below documents what was studied.
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Familial Hypophosphatemic Rickets →
Medialis Ltd.