Category of indirect identifier (incidence) | Cause/trigger | Implemented change |
---|---|---|
Personal participant characteristics (19 publications) | Age, gender, race, age at diagnosis and BMI listed in demographic information | Anonymized demographic listing by modifying specific age information |
Report of early gene therapy data on only two study participants | Removed individual data for two cases from an ongoing study | |
Age, gender, race, ethnicity, weight, and BMI cross-tabulated by treatment groups resulting in multiple n = 1 and n = 3 cell frequencies* | Split demographic table to show identifier only in an overall frequency and list only disease characteristics across treatment groups | |
Age, gender, race, and country of origin in one single participant listing | Removed race and country of origin and left only age and gender | |
Age in description of individual participants | Removed exact age from individual participant description | |
Cell sizes for gender, age and race were small owing to a detailed age group cross‑tabulation | Removed race from the demographics table to reduce indirect identifiers to sex, age, and US origin | |
Age, sex, and race included in the comparison and descriptions of different treatment conditions and outcome findings | Removed race to avoid exposure of specific ethnicity | |
Nationality of two participants in country with low enrolment | Removed nationality in text for the description of protocol deviations | |
Age, gender, race, ethnicity, weight, and BMI cross-tabulated in a multiple-treatment group causing very small cell sizes | Presented demographic identifiers only for the overall group and made cross‑tabulations for the remaining disease parameters (table split) | |
Age, gender, race, and BMI cross-tabulated across multiple treatment groups causing n = 1 frequency | Presented demographic identifiers for the overall group and made cross‑tabulation from the remaining disease parameters (table split) | |
Detailed information on family relationships and ethnic background of participants and original participant identifiers (such as age, gender) used | Removed details regarding family relationships and ethnic background (showed only indicator ‘yes’ for existing family history), participant identifiers replaced with generic identifiers (e.g., participant numbers) | |
Individual participant descriptions: age and sex in study with small group sizes | Removed age from the individual participant descriptions and left only gender information | |
Information related to time, location and investigator contained in computed tomography scans and liver biopsy images | Removed all indicators related to time, location and investigators from scans and images | |
Age, gender, race, and ethnicity listed in demographics table causing multiple small cell sizes in the table | Removed gender as identifier from the table | |
Age, gender, and country list for each participant | Age was recoded to age groups | |
Age, gender, and date of death listed in one table with therapy received and cause of death | Removed exact date of death | |
Exact dates (treatment, SAEs, and diagnosis) in several listings | Removed all dates, but kept study day information | |
Age and gender listed with each arterial occlusive event per participant | Removed gender information from the listing of arterial occlusive events | |
Three indirect identifiers used to describe a single participant | Removed age or gender | |
Location/geographical characteristics (seven publications) | Site numbers (containing part of the participant IDs) reported | Removed site numbers from manuscript as they are usually part of the participant identification number |
Investigator names, sites, country, and frequency of participants enrolled | Removed number of enrolled participants per site and left only list of countries | |
Investigator names (four publications) | Investigator names removed | |
Site number as part of the participant number | Removed site numbers by transforming to consecutive numbers |