A call for a European effort to collect follow-up data on transplant recipients and living donors
Following up on the initiative of Penilla Gunther, a Swedish Fokus patient organisation member, the Steering Group of the ESOT patients’ inclusion initiative decided to endorse and promote a call for increasing monitoring of health and quality of life after transplantation. The call urges policymakers, scientific societies, researchers, physicians, and hospital management organisations dealing with transplantation to work together to achieve the following objectives:
- Establish follow-up registries;
- Promote participation of low-volume transplantation countries;
- Communicate scientific output in lay terms;
- Monitor and improve quality of life after transplantation
The steering group is convinced that collecting health information and quality of life data is essential to improve the transplantation outcome and would like to draw attention to the importance of registries. Of note, the call aims at strengthening the international effort needed to collect data on large cohorts of patients, which is not always possible in a single country, while upholding patients’ confidentiality and data security in compliance with the European GDPR.
European and international patient organisations and associations have endorsed this call. Signatories commit to encouraging patients’ participation in both local and international registries.
If you are interested in joining this initiative, please get in touch with Giovanna Rossi at firstname.lastname@example.org.
[🇫🇷] French version
[🇪🇸] Spanish version
[🇩🇪] German version
[🇵🇹] Portuguese version