Central Registry for Rare Diseases

Description

The Central Registry of Rare Diseases is a database containing certain basic data of all Belgian patients with a rare disease. At present, data is collected only at the genetic centres, but this will later be extended to other centres in order to gain a complete overview.

The term "rare diseases" is used to refer to diseases that occur in fewer than 1 in 2,000 people. The field of rare diseases is very complex due to the large number of rare diseases (up to 8,000) and the remarkable heterogeneity in these diseases. This complexity and, in particular, the rare nature of the diseases lead to problems in terms of diagnosis, care, treatment and research.

A registry is a valuable source of information for patients and patient organisations, care providers, researchers and authorities, and can contribute to improvements in several areas (including epidemiology, care policy, quality assurance, research, administration).

Resources

Name Format Description Link
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User JSON JSON Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
REPORT_SCRA_CRRD PDF Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
REPORT_SCRA_CRRD PDF Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
REPORT_SCRA_CRRD PDF Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
REPORT_SCRA_CRRD PDF Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.2.1.xlsx xlsx Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.2.0 XLS Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.2.0 XLS Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
REPORT_SCRA_CRRD PDF Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.2.0 XLS Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
REPORT_SCRA_CRRD PDF Open resource
REPORT_SCRA_CRRD PDF Open resource
REPORT_SCRA_CRRD PDF Open resource
REPORT_SCRA_CRRD PDF Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User JSON JSON Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User JSON JSON Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.2.0 XLS Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
HD Data Collection Definition of project HDBP0008 CRRD v4.0 20230117 xlsx Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
REPORT_SCRA_CRRD PDF Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
REPORT_SCRA_CRRD PDF Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
REPORT_SCRA_CRRD PDF Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v4.json JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_01_12012023.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
REPORT_SCRA_CRRD PDF Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.0.xlsx xlsx Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Basic_Registration_Form_v5.csv CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
HD_DCD_SPEC_HDBP0008_CRRD_v5.1.1.xlsx xlsx Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
HD_DCD_submjson_HDBP0008_CRRD_Basic_Registration_Form_v5.json JSON Open resource
REPORT_SCRA_CRRD PDF Open resource
HD_DCD_submjson_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.json JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 SCRA CSV CSV Open resource
HD_DCD_submcsv_HDBP0008_CRRD_Central-Registry-for-Rare-Diseases_04_20230428.csv CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
REPORT_SCRA_CRRD PDF Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User CSV CSV Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Data User JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal JSON JSON Open resource
a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Stakeholders CSV CSV Open resource
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a36012ab-8ab5-4fcf-b86c-c5c191ad14b0 Legal CSV CSV Open resource

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