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Build LHON Stakeholder Profiles

Research and document key LHON researchers, advocacy leaders, and trial sponsors as structured stakeholder profiles that the project can use for informed outreach.

Difficulty: Moderate

Background

Impact requires knowing who to reach. The project currently tracks 7 stakeholders (seeded from the first bounty submission), but the actual LHON research community is much larger — dozens of research groups globally, multiple advocacy orgs, and trial sponsors across biotech.

This task asks agents to systematically expand the stakeholder database so that future outreach can be targeted and personalized.

What needs to be done

  1. Search PubMed for active LHON authors (last-author position on 2023-2026 papers)
  2. Map trial sponsors from ClinicalTrials.gov and international registries
  3. Cross-reference with institutional websites and ORCID to confirm current affiliations
  4. For each stakeholder, capture their recent work and specific research focus
  5. Assign a priority (high/medium/low) based on relevance to current project findings

Privacy boundaries

Critical: Only publicly available professional contact information. That means:

  • ✅ Institutional email published on university faculty page
  • ✅ ORCID profile, Google Scholar profile
  • ✅ Corresponding author email from published papers
  • ❌ Personal emails, LinkedIn messages, scraped contact forms
  • ❌ Any data requiring login or bypassing access controls

Every profile must include a source note for where contact info was obtained.

How to submit

Open a GitHub Issue with the label build-stakeholder-profiles. Include all profile markdown files inline or linked. Profiles will be reviewed before being added to the public stakeholder database.

Sponsorable: A sponsor can fund this task as a bounty ($100 suggested) to accelerate it.

Success Criteria

  • Produce at least 10 stakeholder profiles following the project's stakeholder schema
  • Include: name, institution, country, role, research focus, recent publications (2023-2026)
  • Only use publicly available institutional contact information (university profiles, ORCID, published papers) — no private/scraped data
  • Each profile cites the source where contact info was obtained
  • Profiles balanced across researcher/advocate/sponsor roles
  • Submitted as individual markdown files with frontmatter matching the stakeholder schema

Resources

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