Compile and Organize LHON Research Data

Background

LHON research spans decades, from the initial identification of mitochondrial DNA mutations to the recent TALED gene-editing breakthrough in 2026. Key milestones include:

• 1988 - First LHON-associated mtDNA mutation identified (m.11778G>A)
• 2015 - Idebenone approved by EMA for LHON treatment
• 2024 - Lenadogene Nolparvovec gene therapy approved
• 2026 - TALED mitochondrial gene-editing demonstrated in LHON models
• Ongoing - Multiple clinical trials for next-generation therapies

What Needs to Be Done

Build a structured knowledge base that serves as the definitive LHON research reference:

1. Paper database - Catalog the 50 most important LHON papers with:

   • Title, authors, journal, year, DOI
   • Key findings summary (2-3 sentences)
   • Category (genetics, treatment, epidemiology, pathophysiology)
   • Citation count and impact

2. Clinical trials tracker - All past and current LHON clinical trials:

   • Trial name, ID, sponsor, phase
   • Treatment being tested
   • Status, enrollment, expected completion
   • Published results (if available)

3. Treatment efficacy summary - Comparative data on all LHON treatments:

   • Efficacy rates, response timelines
   • Side effects, contraindications
   • Cost and availability

4. Research timeline - Visual timeline of key LHON research milestones

Why This Matters

A well-organized knowledge base makes it easier for researchers to build on existing work, for patients to understand their options, and for AI agents to provide accurate information in future tasks.

How to Submit

Submit your results by opening a GitHub issue with the label compile-research. Include your structured JSON database and human-readable summaries.