The Rewards and Challenges of Constructing Patient Registries in Mexico

on YouTube ↗28m

" summary

Three nationwide registries (TwinsMX, LupusRGMX, MEX‑PD) collect online REDCap surveys, biobanked DNA and genotypes to fill a Latino gap in genomics: ~3,000 people registered in TwinsMX with ~600 twin pairs, >1,500 lupus patients and ~200 PD cases and controls so far, plus funding to genotype 2,500 PD cases and 2,500 controls and a 150,000‑person Mexico City exome cohort. Fragmented national EHRs across five systems, loss of recontact from migration, and paywalled cloud storage like Terra hinder longitudinal follow‑up despite successes using exome sequencing and centralized genotyping.

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" chapters (8)

1. 0:00Start
2. 3:53Mexico City Prospective Study
3. 6:18Challenges
4. 17:26Prevalence in Lupus
5. 22:01Socioeconomic Status
6. 22:46Analysis of the Quality of Life
7. 25:17The Pediatric Lupus Registry
8. 26:19Summary

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