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This trial is complete. It is no longer accepting participants. Results may be available on ClinicalTrials.gov.

NCT05070988

NCT05070988
Completed Not Applicable

Who may be able to join

Who might be able to join this trial:

  • You are at least 6 years old (children and adults are both welcome)
  • You have been diagnosed with a rare disease and are being cared for at the Necker Enfants Malades Hospital in Paris
  • Your rare disease is one of the three most common conditions managed by one of the 10 specialist rare disease centres taking part in this study (these centres cover areas such as: disorders of the oesophagus, bile duct and liver diseases, bone diseases, inherited metabolic conditions, heart defects, intellectual disabilities, brain and blood vessel conditions in children, and genetic or developmental syndromes) (confirm with trial site)
  • You visited the relevant specialist rare disease centre at Necker Hospital at least once between 1 January 2017 and 1 January 2020
  • You have been seen at least once by the medical genetics department at Necker Hospital
  • If you are an adult, you are willing to take part and have been informed about the study; if you are a child, your parent or legal guardian has been informed and agrees to participation, and the child has also been informed

Who may not be able to join:

  • You do not speak French

Important: Always verify eligibility with the trial site directly before applying.

Based on publicly available eligibility criteria from ClinicalTrials.gov. Verify directly with the trial site before acting. This is not medical advice.

Trial details

Status
Completed
Phase
Not Applicable
Sponsor
Assistance Publique - Hôpitaux de Paris
Registry
clinicaltrials_gov
Start date
20 October 2021
Est. completion
29 November 2021

Where this trial is recruiting

🇫🇷 France

Primary endpoints

Oral health-related quality of life assessment

Can't join this trial?

Expanded access pathways

If this trial is not available to you, other access pathways may exist. In Australia, the TGA Special Access Scheme allows access to unapproved therapeutic goods for individual patients.

TGA Special Access Scheme information

Find other recruiting trials on ClinicalTrials.gov

Data last synced from ClinicalTrials.gov: 30 June 2026. Trial status can change. Always verify current status directly with the trial site before making any decision.

View original record on ClinicalTrials.gov