Data Collection

Data Collection

Each healthcare provider (HCP) member of ERN eUROGEN has a responsibility, twice yearly, to provide information on the number of patients with rare diseases that it is treating, as well as other activities undertaken to support the network. This information is then collated by the Coordination Team and submitted to the European Commission. HCPs should gather their data as a matter of routine for each period as soon as it becomes available.

The current data collection exercise is due for submission to the Commission by the end of October. This is to collect data for the first semester (January to June) of 2021. The schedule for the current and future collections is as follows:

Collection Period Coordination Team deadline
2021 Semester 1 13/10/2021
2021 Full Year Mid-March 2022
2022 Semester 1 Mid-October 2022

 

A copy of the full definitions for all metrics can be found on the ECP here. However, the main ones of concern to individual HCPs are summarised below for your convenience, along with links to the information gathered for previous collection rounds.

2.1: Number of new patients referred to the Health Care Providers

4.1: Number of education/training activities not accruing higher education credits

4.2: Number of formal educational activities accruing higher educational credits

5.1: Number of Clinical Trials/Observational prospective studies/Observational cohort or cases-control studies/case-series studies

5.2: Number of accepted peer-reviewed publications in accredited scientific journals

6.1: Number of Clinical Practice Guidelines and other types of Clinical Decision Making Tools adopted

6.2: Number of new Clinical Practice Guidelines or other types of new Clinical Decision Making Tools (clinical consensus statements or consensus recommendations) written

7.1: Number of congresses/ conferences/ meetings at which the ERN activities and results were presented

 

Metric 2.1

Number of new patients referred to the Health Care Providers participating in the ERN with the diagnosis of
a disease or condition that falls within the scope of the ERN.

Definition: The total number of new patients attending the ERNs’ Health Care Providers for the first time during the reporting period, whose disease or condition falls within the scope of the ERN, whatever their age, including visits to outpatient’s clinics, hospital discharges and emergencies, coming from national and international referrals.

Note: Although the data collection only specifies numbers of new patients, as a network, we also collect numbers of both total patients and procedures.

Validation: TBC

 

Metric 4.1

Number of education/training activities not accruing higher education credits aimed at healthcare professionals delivered by the coordination teams or HCP members of the ERN.

Definition: The total number of unique education/training activities not accruing higher education credits aimed at healthcare professionals and/or patients, created by the ERN coordination team, HCP members, Affiliated Partners, ePAGs/Patient Organisations/Representatives of the ERN and delivered during the reporting period. Can be online or physical presentations, courses, educational webinars, and/or videos delivered by the ERN.

Validation: TBC

 

Metric 4.2

Number of formal educational activities that are accruing higher educational credits aimed at healthcare professionals delivered by the coordination teams or HCP members of the ERN.

Definition: The total number of unique education/training activities accruing higher education credits, certified by a formal educational body, aimed at healthcare professionals and/or patients, created by the ERN coordination team, HCP members, Affiliated Partners, ePAGs/Patient Organisations/Representatives of the ERN and delivered during the reporting period. Can be online or physical presentations, courses, educational webinars, and/or videos delivered by the ERN.

Validation: TBC

 

Metric 5.1

This indicator covers different activities involving ERN members in at least two Member States:
5.1.a – Number of Clinical Trials
5.1.b – Number of Observational prospective studies
5.1.c – Number of Observational cohort or cases-control studies
5.1.d – Number of case-series studies

Definition: The total number of unique clinical trials, observational prospective studies (including academic and Industry driven studies), observational cohort studies, case control studies or case-series studies that involve ERN members from two different Member States and acknowledge the ERN, either ongoing or finalized during the reporting period.

Validation: TBC

 

Metric 5.2

Number of accepted peer-reviewed publications in accredited scientific journals regarding disease-groups falling within the scope of the ERN and acknowledging the ERN.

Definition: The total number of unique peer-review publications that have been accepted in scientific journals during the reporting period regarding disease-groups falling within the scope of the ERN. Publications should be PubMed accredited scientific journals and involve as major contributors at least two Health Care Providers from two different Member States within the ERN, and which include an explicit acknowledgement of the ERN such as “This work is generated within the European Reference Network for…” or “This work is supported by the European Reference Network for…”

Validation: A list of publications involving clinicians from current ERN eUROGEN centres can be found here. Those which qualify to be counted for metric 5.2 are marked with [*].

 

Metric 6.1

Number of Clinical Practice Guidelines and other types of Clinical Decision Making Tools, adopted for diseases within the scope of the ERN during the reporting period.

Definition: The number of Clinical Practice Guidelines and other types of Clinical Decision Making Tools, such as clinical consensus recommendations for disease areas within the scope of the ERN not developed by the ERN, that were formally endorsed and adopted by the ERN Board, and are publically available (e.g. on the ERN website).

Validation: TBC

 

Metric 6.2

Number of new Clinical Practice Guidelines or other types of new Clinical Decision Making Tools (clinical consensus statements or consensus recommendations) written by the ERN, in progress or finalized during the reporting period.

Definition: The number of Clinical Practice Guidelines (CPG) and Clinical Decision Support Tools (CDST: clinical consensus statements or consensus recommendations), developed by the ERN, involving at least two Health Care Providers from two different Member States within the ERN. They should acknowledge the ERN, for diseases within the scope of the ERN where no guidelines existed previously and be according to an evidence based recognized methodology. The new CPGs or CDST can be in progress or finalised during the reporting period.

Validation: TBC

 

Metric 7.1

Number of congresses/ conferences/ meetings at which the ERN activities and results were presented.

Definition: The total number of congresses/conferences/meetings at which the ERN activities and results were presented via a dedicated slot in the programme/agenda, acknowledging the ERN, during the reporting period.

Validation: TBC