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Transatlantic registries for minimally invasive liver surgery:towards harmonization

• Authors : van der Heijde, Nicky; Görgec, Burak; Beane, Joal D.

Subjects: Laparoscopic liver surgery; Liver surgery; Minimally invasive liver surgery

• Source: van der Heijde , N , Görgec , B , Beane , J D , Ratti , F , Belli , G , Benedetti Cacciaguerra , A , Calise , F , Cillo , U , De Boer , M T , Fagenson , A M , Fretland , Å A , Gleeson , E M , de

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Global consensus process to establish a core dataset for hidradenitis suppurativa registries

• Authors : Wainman, Hannah E.; Chandran, Nisha S.; Frew, John W.

• Source: Wainman , H E , Chandran , N S , Frew , J W , Garg , A , Gibbons , A , Gierbolini , A , Horvath , B , Jemec , G B , Kirby , B , Kirby , J , Lowes , M A , Martorell , A , McGrath , B M , Naik , H B ,

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Efficacy and safety of sapropterin before and during pregnancy:Final analysis of the Kuvan® Adult Maternal Paediatric European Registry (KAMPER) maternal and Phenylketonuria Developmental Outcomes and Safety (PKUDOS) PKU-MOMs sub-registries

• Authors : Feillet, François; Ficicioglu, Can; Lagler, Florian B.

Subjects: BH; maternal PKU; PKU

• Source: the KAMPER and PKUDOS investigators , Feillet , F , Ficicioglu , C , Lagler , F B , Longo , N , Muntau , A C , Burlina , A , Trefz , F K , van Spronsen , F J , Arnoux , J B , Lindstrom , K ,

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Semantic modelling of common data elements for rare disease registries, and a prototype workflow for their deployment over registry data

• Authors : Kaliyaperumal, Rajaram; Wilkinson, Mark D.; Moreno, Pablo Alarcon

Subjects: FAIR data; Rare disease; Interoperability

• Source: Kaliyaperumal , R , Wilkinson , M D , Moreno , P A , Benis , N , Cornet , R , Vieira , B D S , Dumontier , M , Bernabe , C H , Jacobsen , A , Le Cornec , C M A , Godoy , M P , Queralt-Rosinach , N ,

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Using Existing Clinical Information Models for Dutch Quality Registries to Reuse Data and Follow COUMT Paradigm

• Authors : Schepens, Maike H.J.; Trompert, Annemarie C.; van Hooff, Miranda L.

Subjects: administrative burden; clinical information models; data reuse

• Source: Schepens , M H J , Trompert , A C , van Hooff , M L , van der Velde , E , Kallewaard , M , Verberk-Jonkers , I J A M , Cense , H A , Somford , D M , Repping , S , Tromp , S C & Wouters , M W J M 2022

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Real-world studies of biological treatment in severe asthma:population-based registries, prediction of response and patient-tailored outcomes

• Authors : Kroes, Hans

• Source: Kroes , H 2023 , ' Real-world studies of biological treatment in severe asthma : population-based registries, prediction of response and patient-tailored outcomes ' ,

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Correction: Transatlantic registries for minimally invasive liver surgery: towards harmonization

• Authors : van der Heijde, Nicky; Görgec, Burak; Beane, Joal D.

• Source: van der Heijde , N , Görgec , B , Beane , J D , Ratti , F , Belli , G , Benedetti Cacciaguerra , A , Calise , F , Cillo , U , De Boer , M T , Fagenson , A M , Fretland , Å A , Gleeson , E M , de

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Drug Registries and Approval of Drugs:Promises, Placebo, or a Real Success?

• Authors : Jonker, Carla J.; Kwa, Marcel S. G.; van den Berg, H. Marijke

Subjects: new drugs; postapproval data; patient enrollment

• Source: Jonker , C J , Kwa , M S G , van den Berg , H M , Hoes , A W & Mol , P G M 2018 , ' Drug Registries and Approval of Drugs : Promises, Placebo, or a Real Success? ' ,

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Towards FAIRification of sensitive and fragmented rare disease patient data:challenges and solutions in European reference network registries

• Authors : dos Santos Vieira, Bruna; Bernabé, César H.; Zhang, Shuxin

Subjects: Data steward; FAIR; Patient registry

• Source: dos Santos Vieira , B , Bernabé , C H , Zhang , S , Abaza , H , Benis , N , Cámara , A , Cornet , R , Le Cornec , C M A , ’t Hoen , P A C , Schaefer , F , van der Velde , K J , Swertz , M A ,

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Contribution of patient registries to regulatory decision making on rare diseases medicinal products in Europe

• Authors : Jonker, Carla J.; Bakker, Elisabeth; Kurz, Xavier

Subjects: patient registry; orphan medicinal product (OMP); real-world evidence (RWE)

• Source: Jonker , C J , Bakker , E , Kurz , X & Plueschke , K 2022 , ' Contribution of patient registries to regulatory decision making on rare diseases medicinal products in

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