MHLW: data on designated intractable disease patients provided for research included forms with names and birth dates of 5,640 people

1. 2022-06-27

   It provided designated intractable disease patient data to third parties for research. [1] [2]

2. 2022-08-05

   A researcher reported that the provided data contained a sheet with the whole survey forms. [1] [2]

3. 2022-08-09

   All the provided files were recovered. There was no outflow beyond the researchers. [1] [2]

4. 2022-08-15

   It announced the case and suspended third-party provision. [1] [2]

The provided data held whole survey forms, with names, birth dates and addresses, of 5,517 people with IgA nephropathy and 123 with primary membranoproliferative glomerulonephritis, 5,640 in all. Five of seven facilities received data containing personal data, and six people viewed it. [1] [2]

The institute skipped the step of deleting the sheet in its extraction procedure, and the double check was insufficient. The ministry and its contractor also checked insufficiently. [1] [2]