Article type
Abstract
Background
The Guidelines Programme is focused on providing assistance to the European Reference Networks —henceforth ERNs— on rare diseases. The programme was funded under a contract with the European Commission (2020-2024).
The purpose is to contribute in the process of development, appraisal and implementation of Clinical Practice Guidelines —CPGs— and Clinical Decision Support Tools —CDSTs—.
Objectives
The main objective is to identify the positive aspects and barriers in this guidelines programme in order to facilitate the management and coordination of future initiatives in this field.
Methods
A survey was designed to gather opinions of the ERNs participants in the programme. The survey consists of questions including the main areas from the programme structure as coordination, governance, methodology, training and CPGs and CDSTs development support.
Results
The main benefits and positive aspects in the development of the CPGs identified by the coordination area are the expertise of the professionals and the communication with the EC team.
Regarding the training programme, the inclusion of practical tools has more impact in the participants resulting in a stronger involvement with a better and well-rooted learning experience. The support for the development of CPGs/CDSTs contributed to a better drafting of the products and the appropriate production and dissemination.
The main barriers identified include the difficulty in communication with the ERNs representatives participating in the programme. The creation of an advisory body was identified as an added value of the programme.
On the other hand, the heterogeneity and non-universally applicable methodological resources and the duration of the supporting rounds of the programme are identified as points of improvement in the survey.
Conclusions
The ERN Guideline programme has demonstrated the high relevance and impact that the ERNs could have on the development of CPGs/CDSTs for rare diseases.
A set of methodological handbooks contributed to the standardization of resources, improving communication with the ERNs. The communication and the extension of the time of support are two key elements in the development of this survey.
Future guidelines should involve not only clinical experts and methodologists but also key opinion leaders, patient advocacy groups and people with the rare diseases.
The Guidelines Programme is focused on providing assistance to the European Reference Networks —henceforth ERNs— on rare diseases. The programme was funded under a contract with the European Commission (2020-2024).
The purpose is to contribute in the process of development, appraisal and implementation of Clinical Practice Guidelines —CPGs— and Clinical Decision Support Tools —CDSTs—.
Objectives
The main objective is to identify the positive aspects and barriers in this guidelines programme in order to facilitate the management and coordination of future initiatives in this field.
Methods
A survey was designed to gather opinions of the ERNs participants in the programme. The survey consists of questions including the main areas from the programme structure as coordination, governance, methodology, training and CPGs and CDSTs development support.
Results
The main benefits and positive aspects in the development of the CPGs identified by the coordination area are the expertise of the professionals and the communication with the EC team.
Regarding the training programme, the inclusion of practical tools has more impact in the participants resulting in a stronger involvement with a better and well-rooted learning experience. The support for the development of CPGs/CDSTs contributed to a better drafting of the products and the appropriate production and dissemination.
The main barriers identified include the difficulty in communication with the ERNs representatives participating in the programme. The creation of an advisory body was identified as an added value of the programme.
On the other hand, the heterogeneity and non-universally applicable methodological resources and the duration of the supporting rounds of the programme are identified as points of improvement in the survey.
Conclusions
The ERN Guideline programme has demonstrated the high relevance and impact that the ERNs could have on the development of CPGs/CDSTs for rare diseases.
A set of methodological handbooks contributed to the standardization of resources, improving communication with the ERNs. The communication and the extension of the time of support are two key elements in the development of this survey.
Future guidelines should involve not only clinical experts and methodologists but also key opinion leaders, patient advocacy groups and people with the rare diseases.