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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