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Article ; Online: Longitudinal changes of SARA scale in Friedreich ataxia: Strong influence of baseline score and age at onset.

Porcu, Luca / Fichera, Mario / Nanetti, Lorenzo / Rulli, Eliana / Giunti, Paola / Parkinson, Michael H / Durr, Alexandra / Ewenczyk, Claire / Boesch, Sylvia / Nachbauer, Wolfgang / Indelicato, Elisabetta / Klopstock, Thomas / Stendel, Claudia / Rodríguez de Rivera, Francisco Javier / Schöls, Ludger / Fleszar, Zofia / Giordano, Ilaria / Didszun, Claire / Castaldo, Anna /

Rai, Myriam / Klockgether, Thomas / Pandolfo, Massimo / Schulz, Jörg B / Reetz, Kathrin / Mariotti, Caterina

Annals of clinical and translational neurology

2023 Volume 10, Issue 11, Page(s) 2000–2012

Abstract: Background: The Scale for Assessment and Rating of Ataxia (SARA) is widely used in different types ... for Friedreich ataxia (FA).: Methods: To assess distribution and longitudinal changes of SARA scores and its single ... items, we analyzed SARA scores of 502 patients with typical-onset FA (<25 years) participating in the 4 ...

Abstract	Background: The Scale for Assessment and Rating of Ataxia (SARA) is widely used in different types of ataxias and has been chosen as the primary outcome measure in the European natural history study for Friedreich ataxia (FA). Methods: To assess distribution and longitudinal changes of SARA scores and its single items, we analyzed SARA scores of 502 patients with typical-onset FA (<25 years) participating in the 4-year prospective European FA Consortium for Translational Studies (EFACTS). Pattern of disease progression was determined using linear mixed-effects regression models. The chosen statistical model was re-fitted in order to estimate parameters and predict disease progression. Median time-to-change and rate of score progression were estimated using the Kaplan-Meier method and weighted linear regression models, respectively. Results: SARA score at study enrollment and age at onset were the major predictive factors of total score progression during the 4-year follow-up. To a less extent, age at evaluation also influenced the speed of SARA progression, while disease duration did not improve the prediction of the statistical model. Temporal dynamics of total SARA and items showed a great variability in the speed of score increase during disease progression. Gait item had the highest annual progression rate, with median time for one-point score increase of 1 to 2 years. Interpretation: Analyses of statistical properties of SARA suggest a variable sensitivity of the scale at different disease stages, and provide important information for population selection and result interpretation in future clinical trials.
MeSH term(s)	Humans ; Age of Onset ; Disease Progression ; Friedreich Ataxia/diagnosis ; Prospective Studies ; Spinocerebellar Ataxias
Chemical Substances	ZFYVE16 protein, human (EC 3.4.21-)
Language	English
Publishing date	2023-08-28
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2740696-9
ISSN	2328-9503 ; 2328-9503
ISSN (online)	2328-9503
ISSN	2328-9503
DOI	10.1002/acn3.51886
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Conference proceedings: Development and validation of a new ataxia rating scale: Scale for the Assessment and Rating of Ataxia (SARA)

Schmitz-Hübsch, T / Tezenas du Montcel, S / Baliko, L / Berciano, J / Boesch, S / Durr, A / Giunti, P / Kang, J / Mariotti, C / Pandolfo, M / Rakowicz, M / Schöls, L / Szymanski, S / van de Warrenburg, B / Klockgether, T

Aktuelle Neurologie

2005

Abstract: ... a new scale named Scale for the Assessment and Rating of Ataxia (SARA) that allows a graded assessment ... in 167 and 119 spinocerebellar ataxia (SCA) patients, respectively. SARA is composed of 8 items including ...

Event/congress	78. Kongress der Deutschen Gesellschaft für Neurologie, Wiesbaden, 2005
Abstract	Validated instruments for standardized graded assessment of symptom severity are essential prerequisites for clinical trials. To date, such instruments are lacking for cerebellar ataxia. Although ataxia rating scales have been published, they have not been sufficiently validated. We therefore developed a new scale named Scale for the Assessment and Rating of Ataxia (SARA) that allows a graded assessment of ataxia symptoms on an impairment level. Items were chosen for their specificity for cerebellar involvement and the possibility for standardized performance and rating. To determine essential biometric properties two multicentric validation trials involving 11 centers from 8 European countries were performed in 167 and 119 spinocerebellar ataxia (SCA) patients, respectively. SARA is composed of 8 items including gait, stance, sitting, speech, finger chase, finger-nose test, fast alternating hand movements and heel-shin slide with a sum score range of 0–40 (0=no ataxia, 40=severe ataxia). The scale is supplemented by an Inventory of Non-Ataxia Symptoms (INAS) aiming at a standardized full clinical description of symptoms in SCA patients. The first validation trial allowed to determine objectivity and practicability, as well as reliability (internal consistency, inter-rater reliability, intra-rater reliability) and validity (concurrent validity, comparison with convergent criterion). Results showed sufficient practicability with a mean performance time of 17min. Factorial analysis showed that all items except one were determined by a single factor. Internal consistency was good with Cronbach's alpha 0,90. Inter-rater reliability was very good for the sum score (0.97) but only limited (0.7) for finger-nose test. Mean sum score increased with higher ataxia disability stages. However, data were insufficient to show linearity of the scale due to bias towards less severely affected patients. Unexpectedly, side differences were reported in 33.5% of items measuring limb ataxia. According to these results, a modified scale underwent a second validation trial. The study was performed within the European integrated project on spinocerebellar ataxias (EUROSCA), funded by the European commission. Contributing clinical centers were: Bochum (D), Bonn (D), Brussels (B), Frankfurt a.M. (D), Innsbruck (A), London (UK), Milano (I), Nijmegen (NL), Paris (F), Pecs (H), Santander (E),Tübingen (D), Warsaw (PL).
Language	English
Publishing date	2005-10-26
Publishing place	Stuttgart ; New York
Document type	Article ; Conference proceedings
ZDB-ID	124980-0
ISSN	1438-9428 ; 0302-4350 ; 1431-4886
ISSN (online)	1438-9428
ISSN	0302-4350 ; 1431-4886
DOI	10.1055/s-2005-919541
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Article ; Online: The COVID-19 pandemic impact on continuity of care provision on rare brain diseases and on ataxias, dystonia and PKU. A scoping review.

Cannizzo, Sara / Quoidbach, Vinciane / Giunti, Paola / Oertel, Wolfgang / Pastores, Gregory / Relja, Maja / Turchetti, Giuseppe

Orphanet journal of rare diseases

2024 Volume 19, Issue 1, Page(s) 81

Abstract: One of the most relevant challenges for healthcare providers during the COVID- 19 pandemic has been assuring the continuity of care to patients with complex health needs such as people living with rare diseases (RDs). The COVID-19 pandemic accelerated ... ...

Abstract	One of the most relevant challenges for healthcare providers during the COVID- 19 pandemic has been assuring the continuity of care to patients with complex health needs such as people living with rare diseases (RDs). The COVID-19 pandemic accelerated the healthcare sector's digital transformation agenda. The delivery of telemedicine services instead of many face-to-face procedures has been expanded and, many healthcare services not directly related to COVID-19 treatments shifted online remotely. Many hospitals, specialist centres, patients and families started to use telemedicine because they were forced to. This trend could directly represent a good practice on how care services could be organized and continuity of care could be ensured for patients. If done properly, it could boast improved patient outcomes and become a post COVID-19 major shift in the care paradigm. There is a fragmented stakeholders spectrum, as many questions arise on: how is e-health interacting with 'traditional' healthcare providers; about the role of the European Reference Networks (ERNs); if remote care can retain a human touch and stay patient centric. The manuscript is one of the results of the European Brain Council (EBC) Value of Treatment research project on rare brain disorders focusing on progressive ataxias, dystonia and phenylketonuria with the support of Academic Partners and in collaboration with European Reference Networks (ERNs) experts, applying empirical evidence from different European countries. The main purpose of this work is to investigate the impact of the COVID-19 pandemic on the continuity of care for ataxias, dystonia and phenylketonuria (PKU) in Europe. The analysis carried out makes it possible to highlight the critical points encountered and to learn from the best experiences. Here, we propose a scoping review that investigates this topic, focusing on continuity of care and novel methods (e.g., digital approaches) used to reduce the care disruption. This scoping review was designed according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) standards. This work showed that the implementation of telemedicine services was the main measure that healthcare providers (HCPs) put in place and adopted for mitigating the effects of disruption or discontinuity of the healthcare services of people with rare neurological diseases and with neurometabolic disorders in Europe.
MeSH term(s)	Humans ; COVID-19/epidemiology ; Pandemics ; Dystonia ; Rare Diseases/epidemiology ; Rare Diseases/therapy ; Phenylketonurias ; Brain Diseases ; Brain ; Ataxia ; Continuity of Patient Care
Language	English
Publishing date	2024-02-21
Publishing country	England
Document type	Systematic Review ; Journal Article ; Review
ZDB-ID	2225857-7
ISSN	1750-1172 ; 1750-1172
ISSN (online)	1750-1172
ISSN	1750-1172
DOI	10.1186/s13023-023-03005-9
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Book ; Article ; Online: Political Backlash to Refugee Settlement

Campo, Francesco / Giunti, Sara / Mendola, Mariapia / Tura, Giulia

Cultural and Economic Drivers

2023

Abstract: The 2015 refugee crisis in Europe fueled anti-immigration sentiment in receiving areas, with potential unintended consequences for refugee integration. We investigate the heterogeneity of political backlash across Italian municipalities in the aftermath ... ...

Abstract	The 2015 refugee crisis in Europe fueled anti-immigration sentiment in receiving areas, with potential unintended consequences for refugee integration. We investigate the heterogeneity of political backlash across Italian municipalities in the aftermath of the crisis and assess the role played by local conditions at the time of refugees' settlement, distinguishing between baseline economic and cultural factors. By leveraging the quasi-random dispersal policy and using causal forests, we find that the impact of refugee exposure on anti-immigration backlash is significantly higher in more affluent areas, with more bonding social capital. The opposite holds in contexts where there is meaningful intergroup contact with former immigrants (e.g mixed marriages). We exploit this pattern of heterogeneity to evaluate a matching model to optimally assign refugees to locations and deliver policy implications for novel refugee resettlement schemes that minimize anti-immigration backlash.
Keywords	ddc:330 ; J15 ; H53 ; I38 ; dispersal policy ; refugee social integration ; political preferences
Subject code	390
Language	English
Publisher	Bonn: Institute of Labor Economics (IZA)
Publishing country	de
Document type	Book ; Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Book ; Article ; Online: Sanitation and credit constraints

Augsburg, Britta / Caeyers, Bet / Giunti, Sara / Malde, Bansi / Smets, Susanna

The role of labelled microcredit in India's Swacch Bharat Mission subsidy scheme

2022

Abstract: Remuneration-post-verification subsidies and microcredit have been postulated as potential solutions to imperfect capital markets and commitment problems that impede lumpy human capital investments, but little is known about the merit of combining these ... ...

Abstract	Remuneration-post-verification subsidies and microcredit have been postulated as potential solutions to imperfect capital markets and commitment problems that impede lumpy human capital investments, but little is known about the merit of combining these financing mechanisms. We draw on a cluster RCT in rural India of a sanitation labelled microcredit program, implemented by chance around the onset of a large sanitation policy comprising partial subsidies - Swacch Bharat or 'Clean India' Mission. Linking our survey data to government, MFI and credit bureau administrative data, we make two contributions: first, we provide rigorous evidence of the impacts of labelled microcredit on household sanitation investment and borrowing behaviour. By testing empirical predictions of a simple model, we demonstrate that this ubiquitous credit characteristic plays an important role in achieving impacts. Second, we show that sanitation labelled microcredit can complement renumeration-post-verification subsidy provision by relaxing sanitation credit constraints for subsidy ineligible households, and by providing bridge and complementary funding for subsidy eligible households.
Keywords	ddc:330 ; credit constraints ; microcredit ; subsidies ; sanitation ; SBM India
Subject code	338
Language	English
Publisher	London: Institute for Fiscal Studies (IFS)
Publishing country	de
Document type	Book ; Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Prevalence and Patterns of Antimicrobial Resistance among

Cocca, Giorgia / Piva, Silvia / Magno, Sara Del / Scarpellini, Raffaele / Giacometti, Federica / Serraino, Andrea / Giunti, Massimo

Veterinary sciences

2021 Volume 8, Issue 12

Abstract: The occurrence of antimicrobial resistance in commensal strains ... ...

Abstract	The occurrence of antimicrobial resistance in commensal strains of
Language	English
Publishing date	2021-12-06
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2768971-2
ISSN	2306-7381 ; 2306-7381
ISSN (online)	2306-7381
ISSN	2306-7381
DOI	10.3390/vetsci8120308
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Article: Automated Wound Image Segmentation: Transfer Learning from Human to Pet via Active Semi-Supervised Learning.

Buschi, Daniele / Curti, Nico / Cola, Veronica / Carlini, Gianluca / Sala, Claudia / Dall'Olio, Daniele / Castellani, Gastone / Pizzi, Elisa / Del Magno, Sara / Foglia, Armando / Giunti, Massimo / Pisoni, Luciano / Giampieri, Enrico

Animals : an open access journal from MDPI

2023 Volume 13, Issue 6

Abstract: Wound management is a fundamental task in standard clinical practice. Automated solutions already exist for humans, but there is a lack of applications regarding wound management for pets. Precise and efficient wound assessment is helpful to improve ... ...

Abstract	Wound management is a fundamental task in standard clinical practice. Automated solutions already exist for humans, but there is a lack of applications regarding wound management for pets. Precise and efficient wound assessment is helpful to improve diagnosis and to increase the effectiveness of treatment plans for chronic wounds. In this work, we introduced a novel pipeline for the segmentation of pet wound images. Starting from a model pre-trained on human-based wound images, we applied a combination of transfer learning (TL) and active semi-supervised learning (ASSL) to automatically label a large dataset. Additionally, we provided a guideline for future applications of TL+ASSL training strategy on image datasets. We compared the effectiveness of the proposed training strategy, monitoring the performance of an EfficientNet-b3 U-Net model against the lighter solution provided by a MobileNet-v2 U-Net model. We obtained 80% of correctly segmented images after five rounds of ASSL training. The EfficientNet-b3 U-Net model significantly outperformed the MobileNet-v2 one. We proved that the number of available samples is a key factor for the correct usage of ASSL training. The proposed approach is a viable solution to reduce the time required for the generation of a segmentation dataset.
Language	English
Publishing date	2023-03-07
Publishing country	Switzerland
Document type	Journal Article
ZDB-ID	2606558-7
ISSN	2076-2615
ISSN	2076-2615
DOI	10.3390/ani13060956
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Article ; Online: Intronic

Journal of neurology, neurosurgery, and psychiatry

2024 Volume 95, Issue 2, Page(s) 175–179

Abstract: Background: Intronic GAA repeat expansions in the fibroblast growth factor 14 gene (: Methods: We recruited 45 patients negative for biallelic : Results: Frequency of : Conclusions: GAA- ...

Abstract	Background: Intronic GAA repeat expansions in the fibroblast growth factor 14 gene ( Methods: We recruited 45 patients negative for biallelic Results: Frequency of Conclusions: GAA-
MeSH term(s)	Humans ; Ataxia/genetics ; Bilateral Vestibulopathy/genetics ; Bilateral Vestibulopathy/diagnosis ; Cerebellar Ataxia/genetics ; Cerebellar Ataxia/diagnosis ; Peripheral Nervous System Diseases ; Polyneuropathies ; Syndrome ; Vestibular Diseases
Chemical Substances	fibroblast growth factor 14
Language	English
Publishing date	2024-01-11
Publishing country	England
Document type	Journal Article
ZDB-ID	3087-9
ISSN	1468-330X ; 0022-3050
ISSN (online)	1468-330X
ISSN	0022-3050
DOI	10.1136/jnnp-2023-331490
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Article ; Online: The COVID–19 pandemic impact on continuity of care provision on rare brain diseases and on Ataxia, Dystonia and PKU. A scoping review protocol

Cannizzo, Sara / Quoidbach, Vinciane / Giunti, Paola / Oertel, Wolfgang / Pastores, Gregory / Relja, Maja / Turchetti, Giuseppe

medRxiv

Abstract: One of the most relevant challenges for healthcare providers during the COVID–19 pandemic has been assuring the continuity of care to patients with complex health needs such as people living with rare diseases (RDs). The COVID–19 pandemic accelerated the ...

Abstract	One of the most relevant challenges for healthcare providers during the COVID–19 pandemic has been assuring the continuity of care to patients with complex health needs such as people living with rare diseases (RDs). The COVID–19 pandemic accelerated the healthcare sector9s digital transformation agenda. The delivery of telemedicine services instead of many face–to–face procedures has been expanded and, many healthcare services not directly related to COVID–19 treatments shifted online remotely. Many hospitals, specialist centres, patients and families started to use telemedicine because they were forced to. This trend could directly represent a good practice on how care services could be organized and continuity of care could be ensured for patients. If done properly, it could boast improved patient outcomes and become a post COVID–19 major shift in the care paradigm. There is a fragmented stakeholders spectrum, as many questions arise on: how is e–health interacting with 9traditional9 healthcare providers; about the role of the European Reference Networks (ERNs); if can remote care retain a human touch and stay patient centric. Here, we outline a protocol for a scoping review that investigates this topic, focusing on continuity of care and novel methods (e.g., digital approaches) used to reduce the care disruption. This scoping review protocol was designed according to the Preferred Reporting Items for Systematic Reviews and Meta–Analyses extension for scoping reviews (PRISMA–ScR) standards and will culminate in a narrative synthesis of evidence.
Keywords	covid19
Language	English
Publishing date	2022-07-29
Publisher	Cold Spring Harbor Laboratory Press
Document type	Article ; Online
DOI	10.1101/2022.07.26.22277799
Database	COVID19

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Article ; Online: The impact of COVID-19 on abortion access: Insights from the European Union and the United Kingdom.

Bojovic, Neva / Stanisljevic, Jovana / Giunti, Guido

Health policy (Amsterdam, Netherlands)

2021 Volume 125, Issue 7, Page(s) 841–858

Abstract: Government policies on abortion are a longstanding topic of heated political debates. The COVID-19 pandemic shook health systems to the core adding further to the complexity of this topic, as imposed national lockdowns and movement restrictions affected ... ...

Abstract	Government policies on abortion are a longstanding topic of heated political debates. The COVID-19 pandemic shook health systems to the core adding further to the complexity of this topic, as imposed national lockdowns and movement restrictions affected access to timely abortion for millions of women across the globe. In this paper, we examine how countries within the European Union and the United Kingdom responded to challenges brought by the COVID-19 crisis in terms of access to abortion. By combining information from various sources, we have explored different responses according to two dimensions: changes in policy and protocols, and reported difficulties in access. Our analysis shows significant differences across the observed regions and salient debates around abortion. While some countries made efforts to maintain and facilitate abortion care during the pandemic through the introduction or expansion of use of telemedicine and early medical abortion, others attempted to restrict it further. The situation was also diverse in the countries where governments did not change policies or protocols. Based on our data analysis, we provide a framework that can help policy makers improve abortion access.
MeSH term(s)	Abortion, Induced ; COVID-19 ; Drug Prescriptions ; European Union ; Female ; Health Policy ; Health Services Accessibility ; Humans ; Pandemics ; Pregnancy ; Reproductive Rights ; SARS-CoV-2 ; Telemedicine ; United Kingdom
Language	English
Publishing date	2021-05-17
Publishing country	Ireland
Document type	Journal Article ; Review
ZDB-ID	605805-x
ISSN	1872-6054 ; 0168-8510
ISSN (online)	1872-6054
ISSN	0168-8510
DOI	10.1016/j.healthpol.2021.05.005
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