What is it?

RARE-X is a 501(c)(3) nonprofit established to build a Data Collection Program for families impacted by MED13L. This is a caregiver-entered long-term Natural History research study.

Why should you participate?

  • You own the data! Every survey you enter, you get a copy of! You can use this with doctors, therapists going forward to track your child’s personal history.
  • Every individual counts! Upload genetic reports in multiple languages, share data for those living or passed away, surveys available in English, French, Spanish, and Portuguese, constantly evolving to meet needs of families to advance research.
  • ALL those who consent will see aggregated data for surveys every quarter from the MED13L Foundation.
  • Easy integration into the MED13L website. You can always find your portal!
  • The MED13L Foundation (and researchers) can request de-identified data to share with the community and use for presentations, posters, and beyond.
  • Your data is de-identified and highly protected for anyone requesting it. (This includes compliance with privacy laws around the world!)
  • Inform researchers how MED13L changes over time for your loved one and the community.
  • Comprehensive and validated surveys and tools for trial readiness.
  • Enable the use of data as a placebo (instead of actual patients) in a clinical trial (FDA Guideline).
  • Future Opportunity

Sponsor: MED13L Foundation

Duration: Ongoing

Contact: rheilmann@med13l.org


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