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EuRRECa - First Year Results
S Faisal Ahmed
@eurreca
eurreca.net
This project is part of the project ‘777215 / EuRRECa’ which has received funding from the European Union’s Health Programme (2014-2020)
EuRRECa
Thanks- Jillian Bryce- Chris Smythe- Tom Muir- Salma Ali
EuRRECa
Thanks- Jillian Bryce- Chris Smythe- Tom Muir- Salma Ali
e-REC
https://www.mvls.gla.ac.uk/ERec/Account/Login
Reference Centres Participating in e-REC
Estonia (1)
Lithuania (1)
Germany (8)
Poland (1)
Czech Rep (2)
Italy (5)
Hungary (1)
Netherlands (6)
Belgium (5)
France (3)
Portugal (1)
Spain (2)
Luxembourg (1)
Romania (1)Slovenia (1)
UK (5)
46 Centres from 18 Countries
e-reporting ‘card’ (REDCap) issued monthly to enquire whether clinicians had encountered a new case of any condition within the 8 Endo-ERN MTGs
Unique IDs generated for reported cases- stored locally at centre
Sweden (1)
Croatia (1)
July 2018 – June 2019
Total Number of Participating Centres Paediatric AdultPilot Phase (Jul-18 to Apr-19) 23 24Current 39 40
0%
20%
40%
60%
80%
Jul Aug Sep Oct Nov Dec Jan Feb Mar Apr May Jun
Centres Ac
tively Re
porting, %
<18y ≥18y
Actively Reporting Centres: Jul 18 – Jun 19
2018 2019
2018 2019
Temporal Variation in Cases Reported Jul 18 – Jun 19
0
50
100
150
200
250
Adrenal Ca & PO Gluc & Ins Gen Tum Growth Pituitary Sex Dev Thyroid
<18y (Jul ‐ Dec '18) <18y (Jan ‐ Jun '19)
0
50
100
150
200
250
Adrenal Ca & PO Gluc & ins Gen Tum Growth Pituitary Sex Dev Thyroid
≥18y (Jul ‐ Dec '18) ≥18y (Jan ‐ Jun '19)
Cases, n
Cases, n
Cases Reported per MTG from Jul 18 – Jun 19
Median number of cases
reported per centre
Median number of cases
reported per centre
01020304050607080
Adrenal Ca & PO Gluc & ins Gen Tum Growth Pituitary Sex Dev Thyroid
≥18y
Cases Reported per Centre per MTG from Jul 18 – Jun 19
Commonly Reported Conditions Jul 2018 – Jun 2019
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Children‐MTG 7 (Sex Development & Maturation)
XY DSD Chr DSD Transgender, female to male Transgender, male to female XX DSD Normosmic hypohypo Anosmic hypohypo
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Adults‐MTG 6 (Pituitary)
Pit adenoma Acq hypopituitarism Cong hypopituitarism
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Adults‐MTG 8 (Thyroid)
Non‐metastatic thyroid CA TH signalling disorders Cong hypothyroidism Cong hyperthyroidism
Lessons Learnt
- Good level of enthusiasm amongst reporters- Consistent trends- Some groups of conditions have very general
categories and some are highly granular- Unclear about suspected vs confirmed- Providing unique IDs – laborious task- REDCap – clunky
- New platform
https://www.mvls.gla.ac.uk/ERec/Account/Login
EuRRECa
Thanks- Jillian Bryce- Chris Smythe- Tom Muir- Salma Ali
Core Endocrine Registry - Core Data Elements
Registry ID Local ID First entrydate
Record Date Personentering
data
Country Centre
Consent Foetus DOBYr
Dead/Alive Cause of Death
Sex Gender
Ethnicity Country of birth
Region of birth
City of birth Coding Diagnosis How diagnosis
made
Age at diagnosis
Age at disease onset
City IVF Gestation FH Consanguinity
RD Connect Proposal
http://rd-connect.eu/platform/registries/ontologies/registry-common-data-elements/
• Smaller is better!
• High level of compatibility with- EU CHAFEA JRC- RD-Connect
• High level of interoperability- 26 out of 30 fields havestandards esp LOINC
• Scope for cross-referencing- Orphacodes- SNOMED-CT, ICD, ICPED, etc
• Scope for generic CDE and Main Thematic Group – specific CDE
Core Endocrine Registry - Core Data Elements
Core Endocrine Registry
https://www.mvls.gla.ac.uk/EuRRECa/Account/Login
Launched summer 2019
Pilot - 17 centres are registered- 3 centres have entered 11 patients
Core Endocrine Registry
Summary
- Core Endocrine Registry is ready to use
- Slow uptake but our focus has been on getting the e-REC streamlined
- Next step – longitudinal visits for core outcomes (incl PRO)
- Then, condition specific outcomes
https://www.mvls.gla.ac.uk/EuRRECa/Account/Login
