Building a type 1 diabetes registry in South Africa: Insights from a national multi-stakeholder workshop
Patrick Ngassa Piotie, Penelope Modipane, Michelle Carrihill, Michelle Kruger, Marina Lazaridis, Adriaan Kruger, Luke Shankland, Elsabe Klinck, Camille Castelyn, Joseph Kibachio Mwangi, Melanie Pienaar, Mazvita Muchengeti · 2026
Read Building a type 1 diabetes registry in South Africa: Insights from a national multi-stakeholder workshop by Patrick Ngassa Piotie, Penelope Modipane, Michelle Carrihill, Michelle Kruger, Marina Lazaridis, Adriaan Kruger, Luke Shankland, Elsabe Klinck, Camille Castelyn, Joseph Kibachio Mwangi, Melanie Pienaar, Mazvita Muchengeti (2026) in the Tower of Babel, a free online library of public-domain works preserved in clean, searchable text. No sign-up. The full text is served as a plain-text file at a predictable URL, where text is present: https://antarctic-labs.com/tower-of-babel/PMC13444176.txt.
Description
Piotie and colleagues published a 2026 report on building a diabetes registry in South Africa. Type 1 diabetes needs lifelong insulin, yet national data on it stay thin. Without a registry, planners cannot see where care gaps hurt most. The report sums up a national workshop of clinicians, officials, and patient voices.
Speakers agreed that people with type 1 diabetes stay nearly invisible in current data systems. That invisibility shapes budgets, staffing, and access to insulin and test supplies. The workshop backed a phased, practical build rather than one giant launch. Strong consent rules and clear data governance anchored the shared plan. The authors see the workshop as a turning point for national planning. A working registry would also power research tailored to local needs.
Catalog record
| CREATOR | Patrick Ngassa Piotie, Penelope Modipane, Michelle Carrihill, Michelle Kruger, Marina Lazaridis, Adriaan Kruger, Luke Shankland, Elsabe Klinck, Camille Castelyn, Joseph Kibachio Mwangi, Melanie Pienaar, Mazvita Muchengeti |
|---|---|
| YEAR | 2026 |
| COLLECTION | PAPERS |
| FORMAT | TXT |
| FILE SIZE | 12 KB |
| LICENSE | https://creativecommons.org/licenses/by/4.0 |
| RIGHTS | CC BY |
| SOURCE | Europe PMC |