s faisal ahmed faisal.ahmed@glasgow.ac.uk @eurreca · 2019/12/5  · eurreca - first year results s...

EuRRECa - First Year Results

S Faisal Ahmed

faisal.ahmed@glasgow.ac.uk

@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