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Ryll, Bettina
Publikasjoner (10 av 12) Visa alla publikasjoner
Ryll, B. (2019). No other interest can take precedence: a patient's perspective on oncology drug development [Letter to the editor]. Nature Reviews Clinical Oncology, 16(8), 461-462
Åpne denne publikasjonen i ny fane eller vindu >>No other interest can take precedence: a patient's perspective on oncology drug development
2019 (engelsk)Inngår i: Nature Reviews Clinical Oncology, ISSN 1759-4774, E-ISSN 1759-4782, Vol. 16, nr 8, s. 461-462Artikkel i tidsskrift, Letter (Annet vitenskapelig) Published
sted, utgiver, år, opplag, sider
Nature Publishing Group, 2019
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-391428 (URN)10.1038/s41571-019-0230-4 (DOI)000476653800002 ()31110270 (PubMedID)
Tilgjengelig fra: 2019-10-03 Laget: 2019-10-03 Sist oppdatert: 2019-10-03bibliografisk kontrollert
Makady, A., Kalf, R. R. J., Ryll, B., Spurrier, G., de Boer, A., Hillege, H., . . . Goettsch, W. (2018). Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study. Health and Quality of Life Outcomes, 16, Article ID 222.
Åpne denne publikasjonen i ny fane eller vindu >>Social media as a tool for assessing patient perspectives on quality of life in metastatic melanoma: a feasibility study
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2018 (engelsk)Inngår i: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 16, artikkel-id 222Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Purpose: Development of innovative drugs for melanoma is occurring rapidly. Incremental gains in overall survival amongst innovative products may be difficult to measure in clinical trials, and their use may be associated with increased toxicity profiles. Therefore, HTA agencies increasingly require information on HRQoL for the assessment of such drugs. This study explored the feasibility of social media to assess patient perspectives on HRQoL in melanoma, and whether current cancer- and melanoma-specific HRQoL questionnaires represent these perspectives.

Methods: A survey was distributed on the social media channels of Melanoma Patient Network Europe to assess melanoma patients' perspectives regarding HRQoL. Two researchers independently conducted content analysis to identify key themes, which were subsequently compared to questions from one current cancer-specific and two melanoma-specific HRQoL questionnaires (i.e. EORTC QLQ-C30, EORTC QLQ-MEL38, FACT-M).

Results: In total, 72 patients and 17 carers completed the survey. Patients indicated that family, having a normal life, and enjoying life were the three most important aspects of HRQoL for them. Carers indicated that being capable, having manageable adverse events, and being pain-free were the three most important aspects of HRQoL for patients. Respondents seem to find some questions from HRQoL questionnaires relevant (e.g. Have you felt able to carry on with things as normal?') and others less relevant (e.g. Have you had swelling near your melanoma site?'). Additionally, wording may differ between patients and HRQoL questionnaires, whereby patients generally use a more positive tone.

Conclusions: Social media may provide a valuable tool in assessing patient perspectives regarding HRQoL. However, differences seem to emerge between patient and carer perspectives. Additionally, patient perspectives did not seem to fully correlate to questions posed in cancer- (i.e. EORTC QLQ-C30) and melanoma-specific (i.e. EORTC QLQ-MEL38, FACT-M) HRQoL questionnaires examined.

sted, utgiver, år, opplag, sider
BMC, 2018
Emneord
Social media, Health related quality of life, Real-world data, Patient perspectives
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-372389 (URN)10.1186/s12955-018-1047-z (DOI)000451742300001 ()30497502 (PubMedID)
Forskningsfinansiär
EU, FP7, Seventh Framework Programme, 115546
Tilgjengelig fra: 2019-01-07 Laget: 2019-01-07 Sist oppdatert: 2019-01-07bibliografisk kontrollert
Makady, A., Kalf, R., Ryll, B., Spurrier, G., de Boer, A., Hillege, H., . . . Goettsch, W. (2018). Using social media to collect patient perspectives on quality of life: A feasibility study. Pharmacoepidemiology and Drug Safety, 27(Suppl. 2), 56-56, Article ID 117.
Åpne denne publikasjonen i ny fane eller vindu >>Using social media to collect patient perspectives on quality of life: A feasibility study
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2018 (engelsk)Inngår i: Pharmacoepidemiology and Drug Safety, ISSN 1053-8569, E-ISSN 1099-1557, Vol. 27, nr Suppl. 2, s. 56-56, artikkel-id 117Artikkel i tidsskrift, Meeting abstract (Annet vitenskapelig) Published
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WILEY, 2018
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-364838 (URN)10.1002/pds.4629 (DOI)000441893800114 ()
Tilgjengelig fra: 2018-11-05 Laget: 2018-11-05 Sist oppdatert: 2018-11-05bibliografisk kontrollert
Geissler, J., Ryll, B., di Priolo, S. L. & Uhlenhopp, M. (2017). Improving Patient Involvement in Medicines Research and Development:: A Practical Roadmap. Therapeutic Innovation and Regulatory Science, 51(5), 612-619
Åpne denne publikasjonen i ny fane eller vindu >>Improving Patient Involvement in Medicines Research and Development:: A Practical Roadmap
2017 (engelsk)Inngår i: Therapeutic Innovation and Regulatory Science, ISSN 2168-4790, E-ISSN 2168-4804, Vol. 51, nr 5, s. 612-619Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

The value of patient involvement (PI) in medicines research and development (R&D) is increasingly recognized by all health stakeholders. Despite numerous ongoing PI initiatives, PI so far lacks structure and consistency in approach. Limited formal documentation of PI activities further hampers the sharing of experience and learnings, preventing timely and systematic implementation. This article summarizes the outcomes of several multistakeholder discussions during 2013-2016 in a practical roadmap for PI in medicines R&D. The roadmap highlights specific opportunities for PI along the 4 key stages of the medicines R&D life cycle and is illustrated with concrete examples. This roadmap's aim is to provide a tool to facilitate PI during medicines research and development and is being shared to encourage implementation and further refinement.

sted, utgiver, år, opplag, sider
Sage Publications, 2017
Emneord
patient involvement roadmap, patient input
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-335631 (URN)10.1177/2168479017706405 (DOI)000409535200011 ()
Tilgjengelig fra: 2017-12-11 Laget: 2017-12-11 Sist oppdatert: 2018-01-13bibliografisk kontrollert
Di Paolo, A., Sarkozy, F., Ryll, B. & Siebert, U. (2017). Personalized medicine in Europe: not yet personal enough?. BMC Health Services Research, 17, Article ID 289.
Åpne denne publikasjonen i ny fane eller vindu >>Personalized medicine in Europe: not yet personal enough?
2017 (engelsk)Inngår i: BMC Health Services Research, E-ISSN 1472-6963, Vol. 17, artikkel-id 289Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Background: Personalized medicine has the potential to allow patients to receive drugs specific to their individual disease, and to increase the efficiency of the healthcare system. There is currently no comprehensive overview of personalized medicine, and this research aims to provide an overview of the concept and definition of personalized medicine in nine European countries. Methods: A targeted literature review of selected health databases and grey literature was conducted to collate information regarding the definition, process, use, funding, impact and challenges associated with personalized medicine. In-depth qualitative interviews were carried out with experts with health technology assessment, clinical provisioning, payer, academic, economic and industry experience, and with patient organizations. Results: We identified a wide range of definitions of personalized medicine, with most studies referring to the use of diagnostics and individual biological information such as genetics and biomarkers. Few studies mentioned patients' needs, beliefs, behaviour, values, wishes, utilities, environment and circumstances, and there was little evidence in the literature for formal incorporation of patient preferences into the evaluation of new medicines. Most interviewees described approaches to stratification and segmentation of patients based on genetic markers or diagnostics, and few mentioned health-related quality of life. Conclusions: The published literature on personalized medicine is predominantly focused on patient stratification according to individual biological information. Although these approaches are important, incorporation of environmental factors and patients' preferences in decision making is also needed. In future, personalized medicine should move from treating diseases to managing patients, taking into account all individual factors.

Emneord
Personalized medicine, Definition, Patient stratification, Patient preferences
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-322802 (URN)10.1186/s12913-017-2205-4 (DOI)000399639500005 ()28424057 (PubMedID)
Tilgjengelig fra: 2017-09-13 Laget: 2017-09-13 Sist oppdatert: 2022-09-15bibliografisk kontrollert
Makady, A., Stegenga, H., Ciaglia, A., Debray, T. P. A., Lees, M., Happich, M., . . . Goettsch, W. (2017). Practical implications of using real-world evidence (RWE) in comparative effectiveness research: learnings from IMI-GetReal. Journal of Comparative Effectiveness Research, 6(6), 485-490
Åpne denne publikasjonen i ny fane eller vindu >>Practical implications of using real-world evidence (RWE) in comparative effectiveness research: learnings from IMI-GetReal
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2017 (engelsk)Inngår i: Journal of Comparative Effectiveness Research, ISSN 2042-6305, E-ISSN 2042-6313, Vol. 6, nr 6, s. 485-490Artikkel i tidsskrift, Editorial material (Annet vitenskapelig) Published
Emneord
real-world evidence, non-randomized trials, comparative effectiveness research, health technology assessment
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-346975 (URN)10.2217/cer-2017-0044 (DOI)000412431000001 ()28857631 (PubMedID)
Tilgjengelig fra: 2018-03-28 Laget: 2018-03-28 Sist oppdatert: 2018-03-28bibliografisk kontrollert
Kalf, R., Makady, A., Ryll, B., Spurrier, G. & Goettsch, W. (2016). Social Media: A Valuable Tool To Assess Patient Perspectives Regarding Quality Of Life. Value in Health, 19(7), A749-A749
Åpne denne publikasjonen i ny fane eller vindu >>Social Media: A Valuable Tool To Assess Patient Perspectives Regarding Quality Of Life
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2016 (engelsk)Inngår i: Value in Health, ISSN 1098-3015, E-ISSN 1524-4733, Vol. 19, nr 7, s. A749-A749Artikkel i tidsskrift (Fagfellevurdert) Published
sted, utgiver, år, opplag, sider
ELSEVIER SCIENCE INC, 2016
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-321259 (URN)000396606302504 ()
Tilgjengelig fra: 2017-05-02 Laget: 2017-05-02 Sist oppdatert: 2017-05-02bibliografisk kontrollert
Ryll, B., Sanchez, S., Haitina, T., Tafforeau, P. & Ahlberg, P. E. (2014). The genome of Callorhinchus and the fossil record: a new perspective on SCPP gene evolution in gnathostomes. Evolution & Development, 16(3), 123-124
Åpne denne publikasjonen i ny fane eller vindu >>The genome of Callorhinchus and the fossil record: a new perspective on SCPP gene evolution in gnathostomes
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2014 (engelsk)Inngår i: Evolution & Development, ISSN 1520-541X, E-ISSN 1525-142X, Vol. 16, nr 3, s. 123-124Artikkel i tidsskrift, Editorial material (Annet vitenskapelig) Published
HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-228904 (URN)10.1111/ede.12071 (DOI)000337506800001 ()
Tilgjengelig fra: 2014-07-22 Laget: 2014-07-22 Sist oppdatert: 2017-12-05bibliografisk kontrollert
Poelstra, J. W., Vijay, N., Bossu, C. M., Lantz, H., Ryll, B., Mueller, I., . . . Wolf, J. B. W. (2014). The genomic landscape underlying phenotypic integrity in the face of gene flow in crows. Science, 344(6190), 1410-1414
Åpne denne publikasjonen i ny fane eller vindu >>The genomic landscape underlying phenotypic integrity in the face of gene flow in crows
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2014 (engelsk)Inngår i: Science, ISSN 0036-8075, E-ISSN 1095-9203, Vol. 344, nr 6190, s. 1410-1414Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

The importance, extent, and mode of interspecific gene flow for the evolution of species has long been debated. Characterization of genomic differentiation in a classic example of hybridization between all-black carrion crows and gray-coated hooded crows identified genome-wide introgression extending far beyond the morphological hybrid zone. Gene expression divergence was concentrated in pigmentation genes expressed in gray versus black feather follicles. Only a small number of narrow genomic islands exhibited resistance to gene flow. One prominent genomic region (<2 megabases) harbored 81 of all 82 fixed differences (of 8.4 million single-nucleotide polymorphisms in total) linking genes involved in pigmentation and in visual perception-a genomic signal reflecting color-mediated prezygotic isolation. Thus, localized genomic selection can cause marked heterogeneity in introgression landscapes while maintaining phenotypic divergence.

HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-228535 (URN)10.1126/science.1253226 (DOI)000337531700043 ()
Tilgjengelig fra: 2014-07-17 Laget: 2014-07-16 Sist oppdatert: 2017-12-05bibliografisk kontrollert
Sanchez, S., Dupret, V., Tafforeau, P., Trinajstic, K. M., Ryll, B., Gouttenoire, P.-J., . . . Ahlberg, P. E. (2013). 3D Microstructural Architecture of Muscle Attachments in Extant and Fossil Vertebrates Revealed by Synchrotron Microtomography. PLOS ONE, 8(2), e56992
Åpne denne publikasjonen i ny fane eller vindu >>3D Microstructural Architecture of Muscle Attachments in Extant and Fossil Vertebrates Revealed by Synchrotron Microtomography
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2013 (engelsk)Inngår i: PLOS ONE, E-ISSN 1932-6203, Vol. 8, nr 2, s. e56992-Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

Background: Firm attachments binding muscles to skeleton are crucial mechanical components of the vertebrate body. These attachments (entheses) are complex three-dimensional structures, containing distinctive arrangements of cells and fibre systems embedded in the bone, which can be modified during ontogeny. Until recently it has only been possible to obtain 2D surface and thin section images of entheses, leaving their 3D histology largely unstudied except by extrapolation from 2D data. Entheses are frequently preserved in fossil bones, but sectioning is inappropriate for rare or unique fossil material.

Methodology/Principal Findings: Here we present the first non-destructive 3D investigation, by propagation phase contrast synchrotron microtomography (PPC-SR mu CT), of enthesis histology in extant and fossil vertebrates. We are able to identify entheses in the humerus of the salamander Desmognathus from the organization of bone-cell lacunae and extrinsic fibres. Statistical analysis of the lacunae differentiates types of attachments, and the orientation of the fibres, reflect the approximate alignment of the muscle. Similar histological structures, including ontogenetically related pattern changes, are perfectly preserved in two 380 million year old fossil vertebrates, the placoderm Compagopiscis croucheri and the sarcopterygian fish Eusthenopteron foordi.

Conclusions/Significance: We are able to determine the position of entheses in fossil vertebrates, the approximate orientation of the attached muscles, and aspects of their ontogenetic histories, from PPC-SRmCT data. Sub-micron microtomography thus provides a powerful tool for studying the structure, development, evolution and palaeobiology of muscle attachments.

HSV kategori
Identifikatorer
urn:nbn:se:uu:diva-197999 (URN)10.1371/journal.pone.0056992 (DOI)000315561400020 ()
Forskningsfinansiär
EU, European Research Council, 233111Knut and Alice Wallenberg Foundation
Tilgjengelig fra: 2013-04-08 Laget: 2013-04-08 Sist oppdatert: 2021-06-14bibliografisk kontrollert
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