Transparency

We are committed to being transparent about how we collect, use, and protect your data. Trust is essential to our research mission.

Nonprofit Mission

We are a nonprofit research initiative. We do not sell data, display ads, or have commercial interests. Our sole purpose is advancing understanding of CHS for the benefit of patients and healthcare providers.

Data Protection

We take data protection seriously:

  • No personally identifying information is published
  • Contact emails (if provided) are stored separately from submissions
  • All data is stored securely with encryption
  • We never share individual-level data externally

What We Publish

Once approved, the following is made public:

  • Survey responses (aggregated demographics, symptoms, etc.)
  • Personal stories (with pseudonyms only)
  • Aggregate statistics and trends

We may edit stories to remove any identifying information before publication.

Research Use

Data collected may be used for:

  • Statistical analysis of CHS patterns and outcomes
  • Academic publications (using only aggregate data)
  • Educational materials for healthcare providers
  • Public awareness initiatives

Consent

Before submitting, you will be asked to consent to:

  • Publication consent: Your story and/or survey responses may be published on this website
  • Research use consent: Your data may be used for research purposes as described
  • Contact consent (optional): You may optionally provide an email address if you're willing to be contacted for follow-up questions

You can withdraw your submission at any time by contacting us, and we will remove your data from public display.