Reported Rare Disease Database

1. The ID numbers of the victim and suspected abuser may be blank. 2. Multiple-choice variables, if multiple are selected, are recorded in the same field. 3. Date fields use the ROC calendar; a year/month/day of 000/00/00 means unknown — e.g. 0000101 means year unknown, 1040001 means month unknown, 1040100 means day unknown. 4. The suspected-perpetrator fields hold the primary suspected perpetrator's data. Note: This center's databases are de-identified (fields masked as above); data may only be used on-site and only approved aggregate results exported. 1. The victim record-grouping/matching key is ID_C. 2. The suspected-abuser record-grouping/matching key is ID_D.

1. 可參考全民健康保險罕見疾病申請核發重大傷病證明作業須知。 2. 罕病通報流程（醫療院所、國健署） （一）依罕見疾病防治及藥物法第七條規定「醫事人員發現罹患罕見疾病 之病人或因而致死者，應向中央主管機關報告。主政機關為衛生署 國民健康署。 （二）保險對象就醫時醫師診斷若為罕見之疾病，爰依前項規定至罕見疾 病整合式資訊管理系統填報個案資料，向衛生署國民健康署辦理通 報。 （三）國健署受理通報並經委員專家審查後，審查結果登錄罕見疾病資料 庫（審查結果包括審查通過、未通過、審查中，審查約需時 10工作 日），審查結果該署會發函通知通報醫院並副知健保署。 3. 罕病定義以衛生福利部公告之罕見疾病（主診斷代碼、中英文病名、罕病 序號），並登錄於罕病資料庫之確認個案為限。 4. 資料年度 2012-202202

1. This file does not provide an ID identifier. 2. For other information, refer to the Operation Guidelines for Application and Issuance of Catastrophic Illness Certificates under the National Health Insurance Rare Disease Program. *All personal identification numbers, date of birth, etc., in this database have been shielded and can only be used within a designated area set up by the department. Approved statistical results can only be carried out after review to ensure that the data application and disclosure method cannot identify specific individuals. Primary key and none

1. 本檔無提供 ID識別碼。 2. 其他資料可參考：全民健康保險罕見疾病申請核發重大傷病證明作業須知。 ※本資料庫身分證字號、出生日期等欄位均經屏蔽處理，相關資料僅能於本部 設置之獨立作業區內使用，並攜出經審核通過之統計結果，以確保資料應用及 其揭露方式已無從識別特定當事人。 主鍵與無

• 2025/06/24