Preferences for coordinated care for rare diseases: discrete choice experiment

Authors: Stephen Morris, Holly Walton, Amy Simpson, Kerry Leeson-Beevers, Lara Bloom, Amy Hunter, Angus I. G. Ramsay, Naomi J. Fulop, Lyn S. Chitty, Joe Kai, Alastair G. Sutcliffe, Maria Kokocinska, Larissa Kerecuk, Christine A. Taylor, Pei Li Ng

Source: Orphanet Journal of Rare Diseases, Vol 19, Iss 1, Pp 1-13 (2024)

Subject Terms: Rare diseases, Rare conditions, Care coordination, Discrete choice experiment, Preferences, Medicine

File Description: electronic resource

Relation: https://doaj.org/toc/1750-1172

Access URL: https://doaj.org/article/37337c3adfb448f7ba32607680d4ad1c

Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey

Authors: Jennifer Jones, Marie Cruddas, Amy Simpson, Nick Meade, Daphnee Pushparajah, Michelle Peter, Amy Hunter

Source: Orphanet Journal of Rare Diseases, Vol 19, Iss 1, Pp 1-16 (2024)

Subject Terms: Rare conditions, Patient experience, Overall care, Exploratory analysis, Medicine

File Description: electronic resource

Relation: https://doaj.org/toc/1750-1172

Access URL: https://doaj.org/article/4b7f0c4fa7674ccf80a0014a0ed2330d

Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

Authors: Holly Walton, Pei Li Ng, Amy Simpson, Lara Bloom, Lyn S. Chitty, Naomi J. Fulop, Amy Hunter, Jennifer Jones, Joe Kai, Larissa Kerecuk, Maria Kokocinska, Kerry Leeson-Beevers, Sharon Parkes, Angus I. G. Ramsay, Alastair Sutcliffe, Christine Taylor, Stephen Morris

Source: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-22 (2023)

Subject Terms: Rare conditions, Rare diseases, Care coordination, Survey, Care plan, Care coordinator, Medicine

File Description: electronic resource

Relation: https://doaj.org/toc/1750-1172

Access URL: https://doaj.org/article/57c13eae22f440109398dc2f30c2fa96

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

Authors: S R Ali, J Bryce, A L Priego-Zurita, M Cherenko, C Smythe, T M de Rooij, M Cools, T Danne, H Katugampola, O M Dekkers, O Hiort, A Linglart, I Netchine, A Nordenstrom, P Attila, L Persani, N Reisch, A Smyth, Z Sumnik, D Taruscio, W E Visser, A M Pereira, N M Appelman-Dijkstra, S F Ahmed

Source: Endocrine Connections, Vol 12, Iss 12, Pp 1-12 (2023)

Subject Terms: registries, databases, rare conditions, rare diseases, european reference networks, endo-ern, Diseases of the endocrine glands. Clinical endocrinology, RC648-665

File Description: electronic resource

Relation: https://ec.bioscientifica.com/view/journals/ec/12/12/EC-23-0434.xml; https://doaj.org/toc/2049-3614

Access URL: https://doaj.org/article/73005f645a7f4db899cce7d744b97d0d

Development and evaluation of a personalised psychological intervention to improve adherence to photoprotection in adults with Xeroderma Pigmentosum (XP)

Authors: Robert Sarkany, Jessica Walburn, Rebecca Anderson, Vera Araujo-Soares, Janette Boadu, Martha Canfield, Lesley Foster, Paul McCrone, Myfanwy Morgan, Sam Norton, Kirby Sainsbury, John Weinman

Source: Programme Grants for Applied Research, Vol 12, Iss 03 (2024)

Subject Terms: xeroderma pigmentosum, adherence, dosimeter, mixed methods, photoprotection, rare conditions, intervention mapping, dermatology, Public aspects of medicine, RA1-1270

File Description: electronic resource

Relation: https://doaj.org/toc/2050-4330

Access URL: https://doaj.org/article/bf333ed5b1c44ba486dd1f3fae2057b4

A rare responsibility; Straddling the roles of both the student and the sick

Authors: Zainab Ahmed Alani

Source: Rare, Vol 2, Iss , Pp 100050- (2024)

Subject Terms: Rare disease, Rare conditions, Myasthenia Gravis, Generalised Myasthenia Gravis, Autoimmune disease, Medical education, Medicine, Genetics, QH426-470

File Description: electronic resource

Relation: http://www.sciencedirect.com/science/article/pii/S2950008724000334; https://doaj.org/toc/2950-0087

Access URL: https://doaj.org/article/7c00d6d1ebe442119a375a6e252fe1fa

Pediatric vascular anomalies in Austria. Where are we at? A survey among primary care pediatricians

Authors: Paolo Gasparella, Simone O. Senica, Georg Singer, Chiara Banfi, Christina Flucher, Besiana P. Beqo, Holger Till, Emir Q. Haxhija

Source: Frontiers in Pediatrics, Vol 11 (2023)

Subject Terms: vascular anomalies, health organization, rare conditions, patient journey, infantile hemangioma, Pediatrics, RJ1-570

File Description: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fped.2023.1216460/full; https://doaj.org/toc/2296-2360

Access URL: https://doaj.org/article/4ec8f9db3c1f431582f1cfbb24479d61

Developing a taxonomy of care coordination for people living with rare conditions: a qualitative study

Authors: Holly Walton, Amy Simpson, Angus I. G. Ramsay, Emma Hudson, Amy Hunter, Jennifer Jones, Pei Li Ng, Kerry Leeson-Beevers, Lara Bloom, Joe Kai, Larissa Kerecuk, Maria Kokocinska, Alastair G. Sutcliffe, Stephen Morris, Naomi J. Fulop

Source: Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-25 (2022)

Subject Terms: Rare conditions, Rare diseases, Care coordination, Taxonomy, Qualitative, Health care organisation, Medicine

File Description: electronic resource

Relation: https://doaj.org/toc/1750-1172

Access URL: https://doaj.org/article/da4b5f2da9644371b51dbfe39af368ff

Development of models of care coordination for rare conditions: a qualitative study

Authors: Holly Walton, Amy Simpson, Angus I. G. Ramsay, Amy Hunter, Jennifer Jones, Pei Li Ng, Kerry Leeson-Beevers, Lara Bloom, Joe Kai, Maria Kokocinska, Alastair G. Sutcliffe, Stephen Morris, Naomi J. Fulop

Source: Orphanet Journal of Rare Diseases, Vol 17, Iss 1, Pp 1-24 (2022)

Subject Terms: Care coordination, Rare conditions, Rare diseases, Qualitative, Health care organisation, Medicine

File Description: electronic resource

Relation: https://doaj.org/toc/1750-1172

Access URL: https://doaj.org/article/6d5d8c73433b4495ab02be849911bfc5

Patient-reported experience of clinical care of osteogenesis imperfecta (OI) during the COVID-19 pandemic

Authors: Debra Smyth, Monica Hytiris, Coreen Kelday, Ciara McDonnell, Christine Burren, Adrian Gardner, Lisa Mills, Susan Parekh, Oliver Semler, Angela Stewart, Ingunn Westerheim, Muhammad Kassim Javaid, Patricia Osborne, S. Faisal Ahmed

Source: Frontiers in Public Health, Vol 10 (2023)

Subject Terms: COVID-19, osteogenesis imperfecta (OI), pandemic, rare conditions, rare diseases, remote consultation, Public aspects of medicine, RA1-1270

File Description: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fpubh.2022.951569/full; https://doaj.org/toc/2296-2565

Access URL: https://doaj.org/article/5e25f3659191436a8bde0da47058f050

Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study

Authors: Stephen Morris, Emma Hudson, Lara Bloom, Lyn S Chitty, Naomi J Fulop, Amy Hunter, Jennifer Jones, Joe Kai, Larissa Kerecuk, Maria Kokocinska, Kerry Leeson-Beevers, Pei Li Ng, Sharon Parkes, Angus IG Ramsay, Amy Simpson, Alastair Sutcliffe, Christine Taylor, Holly Walton

Source: Health and Social Care Delivery Research, Vol 10, Iss 5 (2022)

Subject Terms: co-ordinated care, care co-ordination, rare conditions, rare diseases, scoping review, survey, discrete-choice experiment, taxonomy, care co-ordinator, specialist centre, care plan, Medicine (General), R5-920, Public aspects of medicine, RA1-1270

File Description: electronic resource

Relation: https://doaj.org/toc/2755-0060; https://doaj.org/toc/2755-0079

Access URL: https://doaj.org/article/5f3de3f1f6304c148057ace8d5f52d24

The National Institutes of Health COVID-19 NeuroDatabank and NeuroBiobank: A National Resource for Learning, Discovery, and Progress

Authors: Andrea B. Troxel, Jennifer A. Frontera, Carolina Mendoza-Puccini

Source: Frontiers in Neurology, Vol 11 (2021)

Subject Terms: COVID-19, registry, neurology, epidemiology, patient privacy, rare conditions, Neurology. Diseases of the nervous system, RC346-429

File Description: electronic resource

Relation: https://www.frontiersin.org/articles/10.3389/fneur.2020.615061/full; https://doaj.org/toc/1664-2295

Access URL: https://doaj.org/article/abc8468f3e62456c89f5e5e914d8166d

Defining Coordinated Care for People with Rare Conditions: A Scoping Review

Authors: Holly Walton, Emma Hudson, Amy Simpson, Angus I. G. Ramsay, Joe Kai, Stephen Morris, Alastair G. Sutcliffe, Naomi J. Fulop

Source: International Journal of Integrated Care, Vol 20, Iss 2 (2020)

Subject Terms: coordinated care, chronic conditions, rare conditions, definition, components, scoping review, Medicine (General), R5-920

File Description: electronic resource

Relation: https://www.ijic.org/articles/5464; https://doaj.org/toc/1568-4156

Access URL: https://doaj.org/article/a0fdd88e7f1b4956904df658802e6666

Total knee arthroplasty in ochronosis

Authors: Vaibhav G. Patel, MBBS

Source: Arthroplasty Today, Vol 1, Iss 3, Pp 77-80 (2015)

Subject Terms: Alkaptonuria, Total knee replacement, Ochronosis, Ochronotic arthropathy, Operative pearls, Rare conditions, Orthopedic surgery, RD701-811

File Description: electronic resource

Relation: http://www.sciencedirect.com/science/article/pii/S2352344115000229; https://doaj.org/toc/2352-3441

Access URL: https://doaj.org/article/b92c91eb400842679cbbcb7a59c3f869

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