Sophia Zilber

I'm blending my purpose, passion, and professional expertise through my work, advocacy, writing, and speaking. Please learn more and connect with me on my LinkedIn page: https://www.linkedin.com/in/sophiazilber/

Patient registries - tools

Digital course on patient registries for patient foundations

Registry Data Relevance and Reliability Data for regulatory use

Patient Foundations Guide to Starting a Registry

Patient Registry Transparency Checklist

Myths VS Facts About Patient Registries

Patient Registries: Frequently Asked Questions

Patient registry design guide for rare disease foundations

Patient registries - podcasts

Once upon a gene:Rare Disease Collaboration on Patient Registry

Once upon a gene: Choosing and Designing a Patient Registry

Podcast: Getting to quality research from patient registries

CoRDS Podcast: Recruiting to Patient Registries

Cords Podcast: Cure Mito Foundation

Patient registries - papers

Interoperability of Leigh Syndrome Registry with CDISC standards

Leigh Syndrome Global Patient Registry

Mitochondrial Disease Community Registry

Blogs - personal

Courageous Parents Network: Not Home

KevinMD: Getting a terminal diagnosis for my baby

To anyone in medicine: This is why listening matters

KevinMD: When doctors are right

Courageous Parents Network: The Other Side of Innocence

AAP: Interview about faith and end of life

KevinMD: Reflecting on the challenges of patient advocacy

Global Genes: Sometimes the Pen Is Mightier than the Spreadsheet

Global Genes: The little girl they met

Podcasts - personal

Bump in the road: The Power of Motherhood, Love, and Children

KevinMD: A terminal diagnosis for my baby

Scanxiety: When doctors are right

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