2024

The Role of the European Reference Network for Rare Bone Diseases (ERN BOND) and European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) in the Governance of the Management of Rare Bone and Mineral Diseases

Priego Zurita AL, Boarini M, Casareto L, Cherenko M, Mordenti M, Moroni A, … Sangiorgi L.(Calcif Tissue Int., doi:10.1007/s00223-024-01256-7.)

Venous thromboembolism in Cushing syndrome: results from an EuRRECa and Endo-ERN survey

Cherenko M, Appelman-Dijkstra NM, Priego-Zurita AL, Biermasz NR, Dekkers O, Klok F, … Pereira AM.(Endocrine Connections., doi:10.1530/ec-24-0046.)

2023

Data collection on rare bone and mineral conditions in Europe: The landscape of registries and databases

Priego Zurita AL, Grasemann C, Boarini M, Chapurlat R, Mordenti M, Javaid MK, & Appelman-Dijkstra NM.(European Journal of Medical Genetics., v66.12 p104868.)

Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project

Ali SR, Bryce J, Priego-Zurita AL, Cherenko M, Smythe C, de Rooij TM, … Ahmed SF.(Endocrine Connections., v12.12.)

Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol

Clement SC, Visser WE, Lebbink CA, Albano D, Claahsen-van der Grinten HL, Czarniecka A, … van Santen HM.(Endocrine Connections., v12.3.)

Outcome of COVID-19 infections in patients with adrenal insufficiency and excess

Nowotny HF, Bryce J, Ali SR, Giordano R, Baronio F, Chifu I, … Reisch N.(Endocrine Connections., v12.4.)

2022

Design and development of a European registry for parathyroid carcinoma cases within the scope of the European Registries for Rare Endocrine Conditions (EuRRECa)

Marini F, Giusti F, Appelman-Dijkstra N, Cherenko M, Iacobone M, Rejnmark L, … Brandi ML.(International Journal of Bone Fragility., v2.3 p112-114.)

Meeting Report from 2nd ICCBH-ERN BOND Spinal Complications in Children and Adults with Achondroplasia Workshop, Dublin, Ireland, 2nd July 2022

Cheung MS & Mohnike K.(Bone., v165 p116574.)

The European registry for rare bone and mineral conditions (EuRR-Bone): results of a survey on osteogenesis imperfecta and fibrous dysplasia McCune-Albright syndrome

Zurita ALP, Danila OO, Allgrove J, Brandi ML, Bryce J, Chapurlat R, … Appelman-Dijkstra N.(Bone Reports., v16 p101297.)

New cases of rare bone and mineral conditions reported within the first 18 months of the European registry for rare bone and mineral conditions

Zurita ALP, Bryce J, Alves I, Boarini M, Grasemann C, Högler W, … Appelman-Dijkstra N.(Bone Reports., v16 p101510.)

Prenatal dexamethasone treatment for classic 21-hydroxylase deficiency in Europe

Nowotny H, Neumann U, Tardy-Guidollet V, Ahmed SF, Baronio F, Battelino T, … Reisch N.(European Journal of Endocrinology., v186.5 pK17-K24.)

2021

Patients’ priorities and expectations on an EU registry for rare bone and mineral conditions

Javaid MK, Mordenti M, Boarini M, Sangiorgi L, Westerheim I, Alves I, … Grasemann C, ERN BOND Working Group.(Orphanet J Rare Dis., v16.1.)

Society for Endocrinology UK Guidance on the initial evaluation of a suspected difference or disorder of sex development (Revised 2021)

Ahmed SF, Achermann J, Alderson J, Crouch NS, Elford S, Hughes IA, … Turner HE.(Clinical Endocrinology., v95.6 p818-840.)

The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry

Ali SR, Bryce J, Kodra Y, Taruscio D, Persani L, & Ahmed SF.(IJERPH., v18.22 p11968.)

Supporting international networks through platforms for standardised data collection—the European Registries for Rare Endocrine Conditions (EuRRECa) model

Ali SR, Bryce J, Smythe C, Hytiris M, Priego AL, Appelman-Dijkstra NM, & Ahmed SF.(Endocrine., v71.3 p555-560.)

2020

The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes

Ali SR, Bryce J, Tan LE, Hiort O, Pereira AM, van den Akker ELT, … Ahmed SF.(IJERPH., v17.23 p8743.)

An overview of clinical activities in Endo-ERN: the need for alignment of future network criteria

de Vries F, Bruin M, Cersosimo A, van Beuzekom CN, Ahmed SF, Peeters RP, … Pereira AM.(European Journal of Endocrinology., v183.2 p141-148.)

2019

The current landscape of European registries for rare endocrine conditions

Ali SR, Bryce J, Cools M, Korbonits M, Beun JG, Taruscio D, … _ _.(European Journal of Endocrinology., v180.1 p89-98.)

2018

Recommendations for Improving the Quality of Rare Disease Registries

Kodra Y, Weinbach J, Posada-de-la-Paz M, Coi A, Lemonnier S, van Enckevort D, … Taruscio D.(IJERPH., v15.8 p1644.)