The newest addition to the IDDI, this Workstream has hit the ground running! Since its inaugural meeting in June 2023, it has been addressing global access to transplant across different allocation systems and transplant programmes.
The Workstream’s membership includes representatives from Australia, Europe and the United States. Together, they’ve identified the key issues in LTX using a Delphi consensus process that was presented at PVRI 2024 London, and an update was presented at WSPHA in summer 2024. The group has also produced two manuscripts on peri- and post-operative issues in transplantation.
We’re particularly excited about their new project, which will help connect PAH centres with transplant programmes worldwide to ensure that PH patients have better access to transplants.
Interested in accessing global data on PH patient experience? Almost 4,000 patients and carers across 85 countries completed Phase 1 of our PH Global Patient Survey (PHGPS). Questions across all PH groups included diagnostic tests & timelines, genetic testing, treatments, financial burdens, hospital visits, research participation, quality of life, telemedicine, patient-reported outcome measures, and self-monitoring with digital technology. The findings have the potential to improve patient care, guide future research and help us address unmet needs.
