Six solutions for clinical study data sharing in Germany
Abstract Sharing clinical study data is endorsed by many funders and journals, international policy frameworks, and patients. Reuse of clinical study data demonstrably improves health research, and emerging technologies may enhance the value derived from shared data. Unfortunately, clinical research...
Saved in:
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
BMC
2025-05-01
|
| Series: | BMC Medical Research Methodology |
| Online Access: | https://doi.org/10.1186/s12874-025-02560-y |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1849730905618251776 |
|---|---|
| author | Evgeny Bobrov Christina Habermehl Daniel Strech Tracey Weissgerber René Bernard |
| author_facet | Evgeny Bobrov Christina Habermehl Daniel Strech Tracey Weissgerber René Bernard |
| author_sort | Evgeny Bobrov |
| collection | DOAJ |
| description | Abstract Sharing clinical study data is endorsed by many funders and journals, international policy frameworks, and patients. Reuse of clinical study data demonstrably improves health research, and emerging technologies may enhance the value derived from shared data. Unfortunately, clinical research has failed to harness the transformative power of data sharing, and sharing remains the exception. This opinion piece focuses on the massive obstacles to sharing clinical study data in Germany, which results in very low sharing rates, wasted resources, and frustration among local researchers and international partners. We argue that this sharing crisis demands immediate and concerted action. As a remedy, we propose six feasible steps to boost clinical study data availability in Germany, derived from our experience consulting researchers and exploring solutions with international partners. Our recommendations target ethics committees, trial registries, infrastructures, and governance, while addressing data protection concerns. These measures must be flanked by further actions to foster data sharing skills and knowledge as well as, most importantly, the provision of appropriate incentives. Nevertheless, the proposed changes would be a breakthrough for clinical study data sharing in Germany, removing barriers regarding infrastructures, awareness, legal uncertainty, and responsibilities. |
| format | Article |
| id | doaj-art-afcafbeee7e44253836ca037aad22237 |
| institution | DOAJ |
| issn | 1471-2288 |
| language | English |
| publishDate | 2025-05-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Medical Research Methodology |
| spelling | doaj-art-afcafbeee7e44253836ca037aad222372025-08-20T03:08:43ZengBMCBMC Medical Research Methodology1471-22882025-05-012511710.1186/s12874-025-02560-ySix solutions for clinical study data sharing in GermanyEvgeny Bobrov0Christina Habermehl1Daniel Strech2Tracey Weissgerber3René Bernard4QUEST Center for Responsible Research, Berlin Institute of Health at Charité– Universitätsmedizin BerlinQUEST Center for Responsible Research, Berlin Institute of Health at Charité– Universitätsmedizin BerlinQUEST Center for Responsible Research, Berlin Institute of Health at Charité– Universitätsmedizin BerlinQUEST Center for Responsible Research, Berlin Institute of Health at Charité– Universitätsmedizin BerlinQUEST Center for Responsible Research, Berlin Institute of Health at Charité– Universitätsmedizin BerlinAbstract Sharing clinical study data is endorsed by many funders and journals, international policy frameworks, and patients. Reuse of clinical study data demonstrably improves health research, and emerging technologies may enhance the value derived from shared data. Unfortunately, clinical research has failed to harness the transformative power of data sharing, and sharing remains the exception. This opinion piece focuses on the massive obstacles to sharing clinical study data in Germany, which results in very low sharing rates, wasted resources, and frustration among local researchers and international partners. We argue that this sharing crisis demands immediate and concerted action. As a remedy, we propose six feasible steps to boost clinical study data availability in Germany, derived from our experience consulting researchers and exploring solutions with international partners. Our recommendations target ethics committees, trial registries, infrastructures, and governance, while addressing data protection concerns. These measures must be flanked by further actions to foster data sharing skills and knowledge as well as, most importantly, the provision of appropriate incentives. Nevertheless, the proposed changes would be a breakthrough for clinical study data sharing in Germany, removing barriers regarding infrastructures, awareness, legal uncertainty, and responsibilities.https://doi.org/10.1186/s12874-025-02560-y |
| spellingShingle | Evgeny Bobrov Christina Habermehl Daniel Strech Tracey Weissgerber René Bernard Six solutions for clinical study data sharing in Germany BMC Medical Research Methodology |
| title | Six solutions for clinical study data sharing in Germany |
| title_full | Six solutions for clinical study data sharing in Germany |
| title_fullStr | Six solutions for clinical study data sharing in Germany |
| title_full_unstemmed | Six solutions for clinical study data sharing in Germany |
| title_short | Six solutions for clinical study data sharing in Germany |
| title_sort | six solutions for clinical study data sharing in germany |
| url | https://doi.org/10.1186/s12874-025-02560-y |
| work_keys_str_mv | AT evgenybobrov sixsolutionsforclinicalstudydatasharingingermany AT christinahabermehl sixsolutionsforclinicalstudydatasharingingermany AT danielstrech sixsolutionsforclinicalstudydatasharingingermany AT traceyweissgerber sixsolutionsforclinicalstudydatasharingingermany AT renebernard sixsolutionsforclinicalstudydatasharingingermany |