See the published version of this preprint at Orphanet Journal of Rare Diseases.
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Research
Giuseppe Turchetti
Scuola Superiore Sant'Anna
Corresponding Author
License:
This work is licensed under a CC BY 4.0 License. Read Full License
Background
In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN ReCONNET is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases.
Results
The need to develop a specific methodology for the implementation of an organisational model for patients’ care pathways aligns with the mission of the ERNs to improve the care of rare and complex diseases in Europe. In this framework, ERN ReCONNET developed the RarERN Path methodology that is aimed at creating an organisational model for patients’ care pathways taking advantage of the unique setting of ERNs, represented by the large community of experts (researchers, clinicians, healthcare professionals, patients, health economists, hospital managers, etc.) involved in the Networks.
The specific aim of RarERN Path is to provide a valid organisational model for patient-centered care in rare and complex diseases that enables the integration of the different stakeholders involved in the care process, and that adapts in a flexible way to different disease-specific and geographical contexts across Europe.
The RarERN Path methodology foresees six consecutive phases that, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases.
Conclusion
The application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.
Keywords
Rare diseases, patients’ care pathways, European Reference Networks, Complex diseases, Patients involvement, Method, Organisation of care, Health economics, Health Technology Assessment
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Peer Review Timeline
CURRENT STATUS: Published
View the published article at Orphanet Journal of Rare Diseases.
No community comments so far
Editorial decision: Accept
On 21 Nov, 2020
Reviewer #1 agreed
On 14 Nov, 2020
Review #1 received
Received 14 Nov, 2020
Reviewers invited
Invitations sent on 11 Nov, 2020
Editor assigned
On 30 Oct, 2020
Submission checks complete
On 30 Oct, 2020
Editor invited
On 30 Oct, 2020
No comments provided
Editorial decision: Minor revision
On 26 Oct, 2020
Review #3 received
Received 24 Oct, 2020
Review #4 received
Received 15 Oct, 2020
Reviewers invited
Invitations sent on 15 Oct, 2020
Reviewer #1 agreed
On 15 Oct, 2020
Reviewer #2 agreed
On 15 Oct, 2020
Reviewer #3 agreed
On 15 Oct, 2020
Reviewer #4 agreed
On 15 Oct, 2020
Review #1 received
Received 15 Oct, 2020
Review #2 received
Received 15 Oct, 2020
Editor assigned
On 14 Oct, 2020
Submission checks complete
On 13 Oct, 2020
Editor invited
On 13 Oct, 2020
Version 1
Posted 04 Mar, 2020
No comments provided
Reviewer #3 agreed
On 28 Sep, 2020
Reviewer #4 agreed
On 28 Sep, 2020
Review #2 received
Received 17 Mar, 2020
Review #1 received
Received 17 Mar, 2020
Reviewer #2 agreed
On 04 Mar, 2020
Reviewer #1 agreed
On 02 Mar, 2020
Reviewers invited
Invitations sent on 01 Mar, 2020
Editor assigned
On 28 Feb, 2020
First submitted
On 27 Feb, 2020
Submission checks complete
On 27 Feb, 2020
Editor invited
On 27 Feb, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Internal Medicine
Learn more about our company.
A new preprint design is coming!
We have improved readability, clarity, accessibility, and opportunities for engagement.
See the published version of this preprint at Orphanet Journal of Rare Diseases.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research
Giuseppe Turchetti
Scuola Superiore Sant'Anna
Corresponding Author
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Published
View the published article at Orphanet Journal of Rare Diseases.
No community comments so far
Editorial decision: Accept
On 21 Nov, 2020
Reviewer #1 agreed
On 14 Nov, 2020
Review #1 received
Received 14 Nov, 2020
Reviewers invited
Invitations sent on 11 Nov, 2020
Editor assigned
On 30 Oct, 2020
Submission checks complete
On 30 Oct, 2020
Editor invited
On 30 Oct, 2020
No comments provided
Editorial decision: Minor revision
On 26 Oct, 2020
Review #3 received
Received 24 Oct, 2020
Review #4 received
Received 15 Oct, 2020
Reviewers invited
Invitations sent on 15 Oct, 2020
Reviewer #1 agreed
On 15 Oct, 2020
Reviewer #2 agreed
On 15 Oct, 2020
Reviewer #3 agreed
On 15 Oct, 2020
Reviewer #4 agreed
On 15 Oct, 2020
Review #1 received
Received 15 Oct, 2020
Review #2 received
Received 15 Oct, 2020
Editor assigned
On 14 Oct, 2020
Submission checks complete
On 13 Oct, 2020
Editor invited
On 13 Oct, 2020
Version 1
Posted 04 Mar, 2020
No comments provided
Reviewer #3 agreed
On 28 Sep, 2020
Reviewer #4 agreed
On 28 Sep, 2020
Review #2 received
Received 17 Mar, 2020
Review #1 received
Received 17 Mar, 2020
Reviewer #2 agreed
On 04 Mar, 2020
Reviewer #1 agreed
On 02 Mar, 2020
Reviewers invited
Invitations sent on 01 Mar, 2020
Editor assigned
On 28 Feb, 2020
First submitted
On 27 Feb, 2020
Submission checks complete
On 27 Feb, 2020
Editor invited
On 27 Feb, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Internal Medicine
License:
This work is licensed under a CC BY 4.0 License. Read Full License
View the published article at Orphanet Journal of Rare Diseases.
Background
In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN ReCONNET is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases.
Results
The need to develop a specific methodology for the implementation of an organisational model for patients’ care pathways aligns with the mission of the ERNs to improve the care of rare and complex diseases in Europe. In this framework, ERN ReCONNET developed the RarERN Path methodology that is aimed at creating an organisational model for patients’ care pathways taking advantage of the unique setting of ERNs, represented by the large community of experts (researchers, clinicians, healthcare professionals, patients, health economists, hospital managers, etc.) involved in the Networks.
The specific aim of RarERN Path is to provide a valid organisational model for patient-centered care in rare and complex diseases that enables the integration of the different stakeholders involved in the care process, and that adapts in a flexible way to different disease-specific and geographical contexts across Europe.
The RarERN Path methodology foresees six consecutive phases that, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases.
Conclusion
The application of RarERN Path to the different disease-specific and geographical contexts would help to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases across Europe as well as a possible tangible action towards the integration of ERNs into the different European healthcare systems.
Figure 1
Figure 2
Figure 3
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