REALITY LHON Registry
| Status: | Recruiting |
|---|---|
| Conditions: | Ocular, Ocular |
| Therapuetic Areas: | Ophthalmology |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 5/9/2018 |
| Start Date: | January 3, 2018 |
| End Date: | March 2019 |
| Contact: | Barrett Katz, MD |
| Email: | bkatz@gensight-biologics.com |
| Phone: | +1 646 831 3799 |
Observational Registry Study of Leber Hereditary Optic Neuropathy (LHON) Affected Patients
The purpose of this study is to understand the evolution of visual functional and structural
changes and other associated symptoms in patients with LHON. The relation between genetic,
lifestyle and/or environmental factors and the LHON disease will be described, and a better
understanding of the natural history of LHON disease and the healthcare associated to with
the disease will be sought.
In addition, we would also like to understand the economic burden for patients and their
families with LHON resulting from direct and indirect costs they may have because of their
disease.
changes and other associated symptoms in patients with LHON. The relation between genetic,
lifestyle and/or environmental factors and the LHON disease will be described, and a better
understanding of the natural history of LHON disease and the healthcare associated to with
the disease will be sought.
In addition, we would also like to understand the economic burden for patients and their
families with LHON resulting from direct and indirect costs they may have because of their
disease.
Inclusion Criteria:
- Subjects who have a confirmed and genotyped diagnosis of LHON;
- Subjects with visual function outcomes data including at least 2 visual function
assessments between 1 and 3 years after vision loss;
- Subjects who are willing and able to provide written informed consent if required as
per local regulations;
- For LHON subjects under the age of 18 years, permission from a legal guardian to
participate in the study;
- Subjects who are currently taking supplement treatment (e.g. vitamins) will not be
excluded from this study.
Exclusion Criteria:
- Subjects who received any investigational drug, or Idebenone, or participated in any
LHON-related interventional clinical trial during the observational period;
- Subjects without medical charts data available.
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