6th Meeting of the EuRRECa Project Governing Boardwebex

9th March 2020, 13:15-14:00

Minutes

Attending: Faisal Ahmed, Jillian Bryce, Shannon Mullen, Olaf Hiort, Alberto Pereira, Olaf Dekkers, Arlene Smyth, Agnès Linglart, Edward Visser, Anna Nordenström, Zdeněk Šumnik, Thomas Danne, Mehul Dattani, Martine Cools, Domenica Taruscio

Apologies: Harshini Katugampola, Luca Persani, Irene Netchine, Nicole Reisch

WP1 - Coordination FA

The Yr2 techinical report is now due. The LUMC and Glasgow offices are currently exploring how the data storage can be transferred to LUMC. Laura Audi has replaced Jesus Argente on the IAB. EuRR-Bone is a new registry project that has been funded by CHAFEA to support ERN-BOND and this project will be using the platforms developed by EuRRECa. EuRR-Bone will have its own management structure although many in EuRRECa are closely involved in EuRR-Bone.

Action: PGB to draft finance statements to EU portal by 15th March. The report deadline is 31st March.

Action: Include Natasha Appelman-Dijkstra in the EuRRECa PGB as lead of the EuRR-Bone Registry

WP6- e-REC and Core Registry - JB

The two platforms and their contents were shown in detail. The e-REC platform is now fully operational and including bone conditions. The Core Registry is newer and needs time bedding in.

Action: The PGB was encouraged to explore the registries and provide feedback

WP2 - Dissemination & Access – OH

OH emphasized the need for close links with societies to ensure long-term sustainability. ESE and ESPE want to develop a rare disease group which could become a dissemination route for EuRRECa.

The consent and information sheets allow data to be added to other established and approved registries. Good governance and good data management is important. The Data Access Committee will approve diseases registries so that they can have an affiliate status. These affiliate registries could then use the same PIS consent form as EuRRECa. In the longer term future this affiliate status may pave the way for automatic data transfer between approved registries.

Action: WP1 to work with WP2 in developing a sustainability plan

Action: WP1 to work with WP2, WP3 and WP5 to develop a pathway for gaining affiliate status

WP3- Quality Assurance – YK will present this at the Project Group meeting and plans to include some more registries in her survey.

WP4- Core Outcomes – OD

To incorporate core clinical outcomes, starting with the Thyroid group to test the system and show feasibility in a 3-4-month trial. All Expert Working Groups were encouraged to do the same.

Action: WP1, WP4 and WP6 will start incorporating core outcomes in the Core Registry

WP5- Patient, Parent, Ethics – MC

MC raised the point that it would be useful for core outcomes that are incorporated into the Core Registry to be reviewed by patients. All EWGs have patient/parent representation but in addition would be helpful for the draft outcomes to be discussed with WP5 too.

Action: WP1, WP4 and WP6 will start incorporating core outcomes in the Core Registry

Any Other Business: There were three applications submitted for the call for applications to develop registries for rare endocrine conditions

Next meeting: Aug/Sept 2020 via WebEx

Invited Participants:

Faisal Ahmed

WP1 Co-ordinator & WP6 lead

University of Glasgow & Leiden University Medical Centre

Jillian Bryce

WP1 Project Manager

University of Glasgow

Shannon Mullen

WP1 Admin support

University of Glasgow

Olaf Hiort

WP2 lead

University of Lübeck

Alberto Pereira

WP2&4 deputy

Leiden University Medical Centre

Charlotte Van Beuzekom

WP2&4 Project Manager

Leiden University Medical Centre

Luca Persani

WP3 lead

Istituto Auxologico Italiano, Milan

Domenica Taruscio

WP3 deputy

Istituto Superiore di Sanita, Rome

Olaf Dekkers

WP4 Lead

Leiden University Medical Centre

Martine Cools

WP5 Lead

University of Ghent

Arlene Smyth

WP5 deputy

Office For Rare Conditions, Glasgow

Irène Netchine

EWG1 lead

Assistance Publique–Hopitaux de Paris

Agnès Linglart

EWG1 deputy

Assistance Publique–Hopitaux de Paris

Attila Pätócs

EWG2 lead

Semmelweis University, Budapest

Harshini Katugampola

EWG3 lead

Great Ormond Street Hospital

Mehul Dattani

EWG3 deputy

Great Ormond Street Hospital

Edward Visser

EWG4 lead

Erasmus Medical Centre, Rotterdam

Nicole Reisch

EWG5 lead

Ludwig-Maximillians-University, Munich

Anna Nordenström

EWG6 lead

Karolinska University Hospital

Zdeněk Šumnik

EWG7 lead

University Hospital Motol, Prague

Thomas Danne

EWG8 lead

Children´s Hospital AUF DER BULT, Hannover

Actions:

Action: Include Natasha Appelman-Dyjkstra in PGB as lead of the EuRR-Bone Registry

Action: PGB to draft finance statements to EU portal by 15th March. The report deadline is 31st March.

Action: The PGB was encouraged to explore the registries and provide feedback

Action: WP1 to work with WP2 in developing a sustainability plan

Action: WP1 to work with WP2, WP3 and WP5 to develop a pathway for gaining affiliate status

Action: WP1, WP4 and WP6 will start incorporating core outcomes in the Core Registry