The steering group of the European Society for Organ Transplant (ESOT) patients’ inclusion initiative invites European transplant patient organizations to endorse and spread the call: Monitoring health after transplantation: A call for a European effort to collect follow up data on transplant recipients and living donors. This call urges organizations dealing with transplantation to work together to achieve the following objectives:
- To establish follow up registries;
- To promote participation of low-volume transplantation countries;
- To communicate scientific output in lay terms;
- To monitor and improve quality of life after transplantation.
By endorsing this initiative, patient organizations call on:
…hospital management, policy makers, scientific societies, industry and other organizations dealing with transplantation to enhance scrutiny of transplant recipients and living donors with the goal to gain knowledge and ultimately improve their quality of life
…international medical and scientific societies to establish registries to monitor follow-up of transplant recipients and living donors. Beside their function as repository of data and instrument for research, these registries should allow setting indicators to improve patients quality of life.”
“…transplantation centres and national authorities to collect data and to share them with the international community, enabling researchers to analyse large cohorts of transplant recipients and living donors, which may not be achievable at the level of a single country. Anonymised data should be made available to patients organizations that wish to carry out their own research.”
…physicians to adopt standardized questionnaires developed in the context of international registries to report follow up data on transplant recipients and living donors.
…companies active in the life sciences to support the effort to establish and maintain
….the European Union, the European Council and the Parliaments of all European countries to support and facilitate the establishment or the consolidation of local registries and their participation in international initiatives. All transplanted patients and living donors have an equal right to access high-standard healthcare.”
…international registries to make data available broadly and openly to the scientific, medical and patients communities in agreement with the applicable data protection laws.
…researchers to expand their studies to data from large cohorts collected by international registries.
…researchers to communicate the outcome of their research in lay terms in collaboration with patients organizations when possible. It is extremely important for patients to feel involved and to be able to access medical information.
“….scientific societies to collaborate with patients representatives in order to develop platforms dedicated to the collection of data directly from patients, in addition to medical registries. A multi-language native or web-based health app may be the perfect tool. By endorsing this call, signatories commit to encourage patients participation in local and international registries.
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[🇫🇷] French version
[🇪🇸] Spanish version
[🇩🇪] German version
[🇵🇹] Portuguese version