The Lantern Registry: hypothetical registry data

Synthetic data

Everything in the Lantern Registry is invented. The condition, Epilepsy Syndrome X, the genes GENEX and GENEY, the variants, the participants, the countries, and the samples are all made up for practice, and every date is set in the 2040s so that no file here can be mistaken for a real registry export. No real participant, gene, or variant is represented.

The Lantern Registry is the book's practice data set, and an appendix to the book: a hypothetical registry for an invented condition, Epilepsy Syndrome X, caused by variants in an invented gene, GENEX. A second gene named in the data, GENEY, is also invented. The data are built to look like a registry export, with the kinds of problems real exports have, so that every chapter can give you something concrete to practice on. The file names include the word synthetic for the same reason.

Files

File	What it holds	Used in
Registry export	One row per enrollment record, synthetic, exported on the invented date of 15 March 2044	Most chapters
Sample manifest	One row per synthetic biological sample sent to a lab	Chapter 10
Genetics fields	Three genetics fields for a subset of the synthetic participants	Chapter 17

Open them in a spreadsheet, in R or Python, or in REDCap. Keep your downloaded copy untouched and work in a copy, as Chapter 9 recommends.

What the export contains

Field	What the export says it holds
record_id	The registry identifier
enrolled_date	Date of enrollment
dob	Date of birth
sex	Sex
country	Country of residence
diagnosis	Diagnosis as entered
dx_confirmation	How the diagnosis was confirmed
variant	Genetic variant and its classification
onset_age	Age at first seizure
seizure_types	Seizure types
dev_delay	Developmental delay
meds	Current antiseizure medication
last_followup	Date of the most recent follow-up
sz_per_month	Seizures per month at the most recent follow-up
weight_kg	Weight in kilograms

The export has no data dictionary beyond these labels, which is part of the exercise. Writing one is the task in Chapter 7.

How to use it

Each chapter's exercise says which file to open and what to look for. Answers are folded under "Check your work" in each chapter, so you can try first and check after. The interactive lab lets you click through the export and flag problems before you see the key. The answers to every exercise with a fixed answer are also collected on the page for using this book with a group.

The synthetic data are free to use for teaching under the same license as the book.