Description
Spinal muscular atrophy (SMA) is a rare genetic neuromuscular disorder characterized by a loss of motor neurons in the spinal cord and the brainstem, leading to muscle weakness and atrophy. The estimated incidence is around 1:10,000 live births.
TREAT-NMD is a neuromuscular network that aims to ensure that the most promising new therapies reach patients as quickly as possible. The TREAT-NMD Global Network of SMA Registries (n=49) collects a common core dataset and is governed by the TREAT-NMD Global Database Oversight Committee (TGDOC). Researchers and industry can request anonymised and aggregated data via the committee, offering a single point of access to this diverse and extensive dataset.
The TREAT-NMD SMA core dataset containing 23 data items was established in 2008 when the main purpose of the registries was clinical trial readiness and recruitment. In the current SMA landscape there is a need for more widespread longitudinal data collection to support future research and post marketing surveillance (PMS) requirements for emerging therapies. With this in mind TREAT-NMD reviewed and expanded the core dataset for their SMA Registries.
Resources
| Name | Format | Description | Link |
|---|---|---|---|
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| REPORT_SCRA_BNMDR_SMA.PDF | Open resource | ||
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Legal JSON | JSON | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v2_20230321.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae SCRA JSON | JSON | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Data User CSV | CSV | Open resource | |
| HD_DCD_Specs_HDBP0198_BNMDR-SMA_v3.4_20241203.xlsx | xlsx | Open resource | |
| fcb6fda9-b5ae-437e-804f-bd51710a38ae Stakeholders CSV | CSV | Open resource | |
| HD Data Collection Definition of project HDBP0198 SMA v1.3 20211022 | xlsx | Open resource |
Tags
- age
- âge
- amyotrophie-spinale
- artikel-111
- artikel-81
- atrophie-musculaire-spinale
- belgië-(country)
- belgique-(country)
- belgium-(country)
- beneluxa-initiative
- beveiligde-elektronische-brievenbus-(ehealthbox)
- biogen-(company)
- boîte-aux-lettres-électronique-sécurisée-(ehealthbox)
- cobrha-common-base-registry-for-healthcare-actor-(ehealth)
- codage,-anonymisation-et-ttp-(ehealth)
- codering,-anonimisering-en-ttp-(ehealth)
- comité-de-sécurité-de-l'information:-chambre-sécurité-sociale-et-santé
- étude-des-soins-de-santé-(sciensano)
- gender
- geslacht
- gezondheidszorgonderzoek-(sciensano)
- hdbp0198
- healthdata.be-(sciensano)
- health-services-research-(sciensano)
- health-technology-assessment-procedure
- hta
- icd10-g00–g99
- identificatienummer-van-de-sociale-zekerheid-(insz)
- informatieveiligheidscomité:-kamer-sociale-zekerheid-en-gezondheid
- institut-national-d'assurance-maladie-invalidité-(inami)
- landesinstitut-für-kranken-und-invalidenversicherung-(likiv)
- leeftijd
- managed-entry-agreement
- mesh-d009134
- mesh-d013673
- national-institute-for-health-and-disability-insurance-(nihdi)
- neuromuscular-disease
- nidhi-number
- numéro-de-registre-national-(nrn)
- numéro-d'identification-de-la-sécurité-sociale-(niss)
- numéro-inami
- project-ongoing
- proximal-spinal-muscular-atrophy
- rijksinstituut-voor-ziekte-en-invaliditeitsverzekering-(riziv)
- rijksregisternummer-(rrn)
- riziv-nummer
- sciensano
- scra-completed
- sex
- sexe
- snomed-ct-110462006
- snomed-ct-5262007
- source-data-at-healthdata.be-(sciensano)
- spinale-spieratrofie-
- spinal-muscular-atrophy
- yyyy-2020
- yyyy-2021