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OpenTrials
Completed

NCT Number: NCT01892943

Leber Hereditary Optic Neuropathy (LHON) Historical Case Record Survey

The objective of this survey is to establish the clinical course of vision loss and recovery in patients with a genetically confirmed diagnosis of Leber Hereditary Optic Neuropathy (LHON).

Visual acuity changes over time from onset of symptoms and from visual acuity nadir will be the main endpoint analysed.

The survey will collect historically documented visual acuity data for all patients at participating sites with a genetically confirmed diagnosis of LHON. No exclusion criteria apply. Patients are not required to attend the clinic for the survey.

Data will be collected in a completely anonymous manner. Ethical approvals and data release agreements will be obtained as required by local regulations.

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Key information

Conditions

Leber Hereditary Optic Neuropathy (LHON) Congenital, Hereditary, and Neonatal Diseases and Abnormalities Cranial Nerve Diseases Eye Diseases Eye Diseases, Hereditary Genetic Diseases, Inborn Heredodegenerative Disorders, Nervous System Metabolic Diseases Mitochondrial Diseases Nervous System Diseases Neurodegenerative Diseases Nutritional and Metabolic Diseases Optic Atrophies, Hereditary Optic Atrophy Optic Atrophy, Hereditary, Leber Optic Nerve Diseases

Sex eligibility

All sexes

Study type

Observational

Primary location

University Hospitals Leuven, Leuven, Belgium

Loading trial locations.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • patients with genetically confirmed diagnosis of LHON

Treatment and study plan

Primary outcomes

  1. Visual acuity

    Time frame: average 0 to 10 years (retrospective)

    The Entire duration of the disease patient by patient basis up to the date of completion of the Case Report Form (CRF).

Sponsors and collaborators

Lead sponsor

Santhera Pharmaceuticals

Industry

Collaborators

  • European Vision Institute Clinical Research Network

Registry information

Important dates

Study start
2013
Primary completion
2014
Study completion
2014
First posted
Jul 8, 2013
Registry last updated
May 15, 2014

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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