European Research Network Research Articles

Biobanking rare gynaecological tumours – How harmonised is data collection?

IntroductionGYNOCARE, the European Network for Gynaecological Rare Cancer Research, set out to evaluate the current status of biobanks with access to rare gynaecological tumours, with a view to harmonising sample and data collection and associated consent, to facilitate collaborative cross-border research, enabling clinical trials and translational research. MethodsTwo digital surveys were formulated, one covering clinical and scientific parameters and one exploring ethical and regulatory issues around informed consent. ResultsData were analysed for 20 common responses, from 7 European countries. Tissue was the main sample type biobanked with 63 % also banking blood. Documentation of clinical data, treatment regimens and classification systems varied. Eighty percent collected pathological information. Most biobanks were linked to medical records but only one fifth with national registries.The Information Sheet covered governance, benefits/risks, sharing (mainly for non-profit research), return of results and data protection safeguards. Only 37 % informed patients about sample and data storage, although about half stored samples for an indefinite time. Pseudonymisation and Data Protection Officer approval were the prime data safeguards. Less than half explained the difference between anonymisation and pseudonymisation. Broad consent was the norm (84 %) and 95 % granted the right to withdraw consent. Three countries have Biobank legislation. ConclusionThese surveys provide a snapshot of the current state of biobanks and highlight divergences in the consent process and data management. More work is needed to understand what parameters are being gathered across more EU countries and thus harmonise the sample and data collection processes to facilitate cross-border research.

Upfront or delayed surgery in resectable hepatoblastoma: analysis from the children’s hepatic tumors international collaboration database

In the treatment of resectable hepatoblastoma (HB), it has not been established whether upfront surgery (UF) at diagnosis or neoadjuvant chemotherapy and delayed surgery (DL) is preferred. We compared patients with localized HB who underwent either UF, or DL after neoadjuvant chemotherapy in the Children's Hepatic tumors International Collaboration (CHIC) database of 1605 cases enrolled in eight multicenter hepatoblastoma trials between 1988 and2010. Among the 512 resectable HB patients who had PRETEXT (PRETreament EXTent of disease) I or II unruptured tumors at diagnosis without extrahepatic invasion, distant metastases, or massive vascular invasion, 172 underwent UF and 340 underwent DL. The primary outcomes were event-free and overall survivals after start of treatment in these two groups. Survival analysis was performed using the Kaplan-Maier analysis with long-rank tests and multivariable Cox regression models. Complete resection rates were comparable (93.6% in UF and 89.7% in DL). The total cycles of chemotherapy of DL (median:6) were significantly more than those of UF (median:4) (P<0.01). The 5-year event-free survival (EFS) was 90.6% and 86.6% (P=0.89) in the UF and DL cohorts, respectively. The surgical complications, recurrence rates, and late complications were not significantly different between the cohorts but the EFS rates of DL patients with a low alpha-fetoprotein (AFP) level (100-999ng/mL) or older age at diagnosis (≥3 years old) were significantly worse than others. The outcomes, surgical resectability, and complications were not significantly different between the UF and DL groups. Eligible patients with a low AFP level (<1000ng/mL) or older age (≥3 years old) showed better outcomes in the UF group and might be considered for initial resection. European Network for Cancer Research in Children and Adolescents, funded through the Framework Program 7 of the European Commission; Children's Oncology Group Cure Search grant contributed by the Hepatoblastoma Foundation; Practical Research for Innovative Cancer Control and Project Promoting Clinical Trials for Development of New Drugs and Medical Devices, Japan Agency for Medical Research and Development; Japan Society for the Promotion of Science; and Swiss Cancer Research grant.

Abolition of coercion in mental health services – A European survey of feasibility

BackgroundIn 2019, the Council of Europe agreed to urge member states to take steps toward total abolition of psychiatric coercive measures. AimsTo test if this aspiration is perceived as realistic and what the alternative would be in the event of a total abolition, we surveyed members of the European FOSTREN network of mental health practitioners and researchers, which is specifically dedicated to exchanging knowledge on reducing psychiatric coercion to its minimum. MethodsWeb-based survey. Categorical responses were analyzed using frequencies, and free text responses were analyzed through thematic analysis. ResultsIn total, out of 167 invitations to FOSTREN network members, 76 responded to the survey (Response Rate 45.5%). A minority (31%) of participating experts dedicated to the reduction of psychiatric coercive measures believed a total abolition to be an achievable goal. A commonly held belief was that total abolition is not achievable because mental health disorders are difficult to treat and may cause violence, necessitating coercion, and there is a need to protect the involved persons from harm. Those responding that complete abolition is achievable argued that the consequences of coercion outweigh any gains and indicated that use of advance directives are sufficient as alternatives to coercion. ConclusionOf a European group of experts specifically dedicated to the reduction of psychiatric coercion who participated in this questionnaire study, a minority believed a total abolition be an achievable goal. The study adds to the empirical evidence of the feasibility of the aspiration to totally abolish involuntary measures in the mental health services from the perspective of experts.

Behavioral sciences applied to acute care teams: a research agenda for the years ahead by a European research network

BackgroundMulti-disciplinary behavioral research on acute care teams has focused on understanding how teams work and on identifying behaviors characteristic of efficient and effective team performance. We aimed to define important knowledge gaps and establish a research agenda for the years ahead of prioritized research questions in this field of applied health research.MethodsIn the first step, high-priority research questions were generated by a small highly specialized group of 29 experts in the field, recruited from the multinational and multidisciplinary “Behavioral Sciences applied to Acute care teams and Surgery (BSAS)” research network – a cross-European, interdisciplinary network of researchers from social sciences as well as from the medical field committed to understanding the role of behavioral sciences in the context of acute care teams. A consolidated list of 59 research questions was established. In the second step, 19 experts attending the 2020 BSAS annual conference quantitatively rated the importance of each research question based on four criteria – usefulness, answerability, effectiveness, and translation into practice. In the third step, during half a day of the BSAS conference, the same group of 19 experts discussed the prioritization of the research questions in three online focus group meetings and established recommendations.ResultsResearch priorities identified were categorized into six topics: (1) interventions to improve team process; (2) dealing with and implementing new technologies; (3) understanding and measuring team processes; (4) organizational aspects impacting teamwork; (5) training and health professions education; and (6) organizational and patient safety culture in the healthcare domain. Experts rated the first three topics as particularly relevant in terms of research priorities; the focus groups identified specific research needs within each topic.ConclusionsBased on research priorities within the BSAS community and the broader field of applied health sciences identified through this work, we advocate for the prioritization for funding in these areas.

Virology, pathogenesis, epidemiology and clinical management of HTLV-1 infection. Proceedings of the 30th HTLV European research network (HERN 2023)

Abstract The 30th workshop of the HTLV European Research Network (HERN) was held in Madrid on September 15–16, 2023. Over fifty researchers from Europe and America convened for a two-day conference to update and discuss basic science, epidemiology, clinical management and therapeutics for patients with HTLV-1 infection. Scientific topics addressed included new estimates for HTLV-1 in Europe; impact of antenatal screening on mother-to-child HTLV-1 infections; new insights into the molecular epidemiology of HTLV-1; reports of elite controllers for HTLV-1 infection; role of antiretrovirals as HTLV-1 pre-exposure prophylaxis; and prospects for a HTLV-1 vaccine. The group agreed to submit a formal request to WHO for increasing the global surveillance and awareness of HTLV-1. This viral infection is a potentially life-threatening, neglected condition with neither treatment nor vaccine. At this time, expanding HTLV-1 screening is the most effective way to reduce viral dissemination.

Toward an Undergraduate Research Network in Europe and Beyond

This article describes the initiative to establish a European network for undergraduate research (UR). This began with national initiatives in Germany and the United Kingdom, dating back 10 to 20 years. A strong impetus was given by the European project on digital UR (2021–2023), which also was a response to COVID-19 and extended the possibilities of digital UR for cross-cultural collaboration. The next step should be to seize the postpandemic opportunity to advance UR in Europe through new hybrid pathways, with stronger links to national and European policies

Optimization of Automated Dimethylmethylene Blue Assay for Quantification of Pediatric Urine Samples.

The metachromatic dye dimethylmethylene blue is used to quantify total glycosaminoglycans in urine. Understanding the interaction of dimethylmethylene blue with glycosaminoglycans is pertinent to optimize the assay procedure depending on the type of sample and interpret the findings meaningfully. The present spectrophotometric study determined the optimum sample-to-dye ratio, primary wavelength for measuring absorbance, after studying the interaction of two different chondroitin sulfate species (unfractionated chondroitin sulfate from bovine trachea vs. chondroitin sulfate oligosaccharide with degree of polymerization of 12, from shark cartilage) with dimethylmethylene blue. Respective dye-glycosaminoglycan complexes of the two chondroitin sulfate species showed significantly different absorbance maxima, while that of the chondroitin sulfate oligosaccharide was closer to absorbance maxima of urine glycosaminoglycans. The chondroitin sulfate oligosaccharide showed relatively less stable absorbance readings at higher concentrations in the reaction volume. Furthermore, the chondroitin sulfate reference materials exhibited differences in the linearity of standard curves and hence parallelism. Based on the findings, the method was semiautomated on Beckman Coulter D✕C 700 biochemistry analyzer using the chondroitin sulfate oligosaccharide as the standard. The urine glycosaminoglycan concentration obtained was slightly lower but reasonably close to that obtained through the External Quality Assurance (EQA) scheme administrated by ERNDIM (European Research Network, Inherited Disorders of Metabolism). The findings of the present study can be used to guide the dimethylmethylene blue assay optimization, redevelopment efforts, and harmonization across laboratories. The chondroitin sulfate oligosaccharide is better than the unfractionated chondroitin sulfate from bovine trachea due to its absorbance maxima closer to urine glycosaminoglycans. On the other hand, unfractionated chondroitin sulfate exhibit poor parallelism leading to falsely lower urine glycosaminoglycan levels.

HIV pre-exposure prophylaxis services, provision, and delivery in the European treatment network of HIV, hepatitis and global emerging infectious diseases (NEAT ID).

We conducted a survey to evaluate HIV pre-exposure prophylaxis (PrEP) practices in a European clinical research network on HIV, hepatitis, and global infectious diseases (NEAT ID). An online survey comprising 22 questions was sent via a secure electronic tool to the investigating physician of each of the 342 NEAT ID study centres across 15 European countries in November 2020. In total, 50 sites from 12 countries responded (15% response rate). Most sites were in Western Europe, two were in Poland, and one was in Hungary. Of the responding sites, 45 provided PrEP services for a total of 27 416 PrEP users, with 1361 new PrEP initiators each month. These centres supplied PrEP for men who have sex with men (100%), people who inject drugs (84%), sex workers (84%), women (62%), and transgender women (31%). PrEP persistence after 1 year was >90%, 75%-90%, and 40%-75% in 17, 24, and 4 centres, respectively. In total, 32/45 (71%) centres reported strong community-based organization commitment at their site, and 15/45 (33%) centres developed task-shifting processes to deliver PrEP through nurses (11/15), pharmacists (5/15), and key-population peers (2/15). The biggest barriers to implementation of PrEP were low awareness of and knowledge about PrEP (47%), unwillingness to disclose sexual identity or at-risk behaviour (36%), and lack of administrative support (29%). Of the 45 centres, 32 (71%) have already been involved in PrEP research and 43 (96%) were interested in participating in such studies. The few NEAT ID centres that responded to the survey showed disparities in PrEP deployment and practices despite a common interest in participating in research in this field.

HTLV European Research Network 2023: the silent pandemic of HTLV-1 infection.

HTLV European Research Network 2023: the silent pandemic of HTLV-1 infection.

On judging and being judged

This report is an edited transcript of a speech Livi Michael gave as keynote speaker at the European Network for Short Fiction Research (ENSFR) conference in Lisbon 2022. She argues that despite the need to support and promote short fiction, corporate, commercial publishing is not the best way forward. Short fiction needs to retain its links to the independent sector, and to the academy, where different values apply. Corporate publishing necessarily relies on marketing and commercial success, whereas independent publishers, and researchers, continue to value excellence and virtuosity. She also argues that greatness in fiction is mainly to be found in the short form, and that, while it has become a politically compromised, overused term, ‘greatness’ it is still a useful concept for writers and researchers who are driven by what inspires them and it should therefore be reclaimed. Writers and researchers are regularly involved in judging short fiction, and while judgement of any kind should be interrogated, the ideal of greatness is more appropriate as a standard for the short form than commercial success.

Foreword

The volume presented here would not have been possible without the 12th Biennial Conference of the European Research Network About Parents in Education (ERNAPE) that took place in Gdansk on September 18-20, 2019: Parent Engagement as Power: Empowering Children, Schools and Societies1 . Most of the articles presented in the volume are papers delivered at the conference and later modified as a result of conference discussions and peer reviewing. As it was stated in the conference book, the message embedded in the network’s name is that parents are part of education (Mendel 2019: 9). Following the message of Theodore Brameld's book Education is Power, one can say that parents are those who share and shape its force (1965). This broad issue has a complex nature that needs to be examined. On the one hand, we should see parents as citizens whose engagement is crucial in acts of direct democracy: from their “voting with feet” while they make decisions concerning the choice of educational institutions, to their sustained work in social movements and organizations like Sanctuary Schools, Alliance to Reclaim Our Schools, Our Cities Our Schools, etc. This points to the complex relations between private lives and political activism. As schools have become subject to controversial policies, like those connected to urban marketing or gentrification and school closures, being a parent shows its political face in a direct way probably unknown to previous generations.

Editorial

The articles for this special issue of IJPE arose out of the 11th biennial conference of the European Research Network About Parents in Education (ERNAPE) which was held in July 2017 at the University of Roehampton, London, UK. The conference theme was Intensification, constraint and opportunity: changing roles for parents, schools and communities. Addressing equity and diversity issues. The conference attracted participants from across the world and this global dimension of ERNAPE is also indicated by the composition of the articles presented here. The ten articles that comprise the special issue are based on research arising in Canada, Taiwan, China, Switzerland, Poland, Indonesia, the UK, Cyprus, Finland and Russia. This diverse representationindicates the growing and widespread international research and policy concerns and significance of parents, communities and education.

The perspectives of older people living with dementia regarding a possible move to a nursing home

Background/Objectives Moving into a nursing home is often an unavoidable life event for older people living with dementia. It is associated with negative emotions and outcomes. Research capturing their perspectives is scarce. This study aims to identify how older people living with dementia perceive a potential life in a nursing home and to understand their (future) care wishes. Materials and methods This study is part of the European TRANS-SENIOR research network. The study followed a qualitative phenomenological methodology. Semi-structured interviews with 18 community-dwelling older people living with dementia were conducted between August 2018 and October 2019 (METCZ20180085). A stepwise interpretive phenomenological analysis was performed. Results The majority of community-dwelling older people feared the idea of potentially moving to a nursing home. The participants associated a possible move with negative perceptions and emotions. Additionally, this study emphasized the importance of knowledge of current and past experiences with care when identifying the participant’s wishes. They wanted to remain (a) individuals, who are (b) autonomous and have (c) social contacts if they would move to a nursing home. Discussion/Implications This study showed how past and current care experiences can educate/inform healthcare professionals on the future care wishes of older people living with dementia. The results indicated that listening to the wishes, and life stories of people living with dementia could be a way of identifying ‘a suitable time’ to suggest a move to a nursing home. This could improve the transitional care process and adjustment to living in a nursing home.

A long-term (1986-2010) phytoplankton dataset from the LTER-Italy site Lake Candia

In this paper we describe a 25-year (1986-2010) dataset of phytoplankton cell density abundance and biovolume in Lake Candia, a eutrophic, natural, small, and shallow lake located in north-western Italy, with data that are made available through the GBIF repository. The lake belongs to the national (LTER-Italy), European (LTER-Europe) and International (ILTER) long-term ecological research (LTER) networks. Phytoplankton samples were collected approximately monthly at the maximum depth station of the lake (7.7 m) and analysed with the inverted microscope, estimating both the cell density abundance and biovolume of each taxon. The dataset includes 10,120 georeferenced occurrences related to 545 taxa. During this 25-year period, the lake underwent profound modifications mainly related to the lake biomanipulation activities addressed to the management of aquatic macrophyte and to the evolution of the trophic condition. Making this dataset available represents a contribution to the current activities of the LTER networks for defining and reconstructing spatial and temporal dynamics and to identify and compare reliable trends.

Diffuse alveolar haemorrhage in children: an international multicentre study

Paediatric diffuse alveolar haemorrhage (DAH) is a rare heterogeneous condition with limited knowledge on clinical presentation, treatment and outcome. A retrospective, descriptive multicentre follow-up study initiated from the European network for translational research in children's and adult interstitial lung disease (Cost Action CA16125) and chILD-EU CRC (the European Research Collaboration for Children's Interstitial Lung Disease). Inclusion criteria were DAH of any cause diagnosed before the age of 18 years. Data of 124 patients from 26 centres (15 counties) were submitted, of whom 117 patients fulfilled the inclusion criteria. Diagnoses were idiopathic pulmonary haemosiderosis (n=35), DAH associated with autoimmune features (n=20), systemic and collagen disorders (n=18), immuno-allergic conditions (n=10), other childhood interstitial lung diseases (chILD) (n=5), autoinflammatory diseases (n=3), DAH secondary to other conditions (n=21) and nonspecified DAH (n=5). Median (IQR) age at onset was 5 (2.0-12.9) years. Most frequent clinical presentations were anaemia (87%), haemoptysis (42%), dyspnoea (35%) and cough (32%). Respiratory symptoms were absent in 23%. The most frequent medical treatment was systemic corticosteroids (93%), hydroxychloroquine (35%) and azathioprine (27%). Overall mortality was 13%. Long-term data demonstrated persistent abnormal radiology and a limited improvement in lung function. Paediatric DAH is highly heterogeneous regarding underlying causes and clinical presentation. The high mortality rate and number of patients with ongoing treatment years after onset of disease underline that DAH is a severe and often chronic condition. This large international study paves the way for further prospective clinical trials that will in the long term allow evidence-based treatment and follow-up recommendations to be determined.

Changes in physiotherapy services and use of technology for people with multiple sclerosis during the COVID-19 pandemic.

The COVID-19 pandemic has led to reorganization or reduction of neurorehabilitation services for people with multiple sclerosis (PwMS). The aim of this study was to explore the changes in the organizational framework and technology usage in physiotherapy services for PwMS during the COVID-19 pandemic. This international cross-sectional survey study was designed, developed, and disseminated by RIMS European Network for Best Practice and Research in Multiple Sclerosis Rehabilitation. Physiotherapists from nine countries (Australia, Belgium, Czech Republic, Ireland, Israel, Italy, Norway, Spain, Turkey) who provided physiotherapy services to PwMS, were invited to complete an online survey to compare physiotherapy delivery to PwMS prior to and during the pandemic period. The survey was completed by 215 physiotherapists. Accessibility, the average number, length and perceived effectiveness of physiotherapy sessions provided to PwMS were significantly reduced during the COVID-19 pandemic (p=0.001). Physiotherapists increased the advice of mobile apps, recorded videos for rehabilitation and exercise websites during the pandemic (p<0.001) while the use of telerehabilitation and virtual reality technology did not change. There was of a reduction in the number, duration and perceived effectiveness of rehabilitation sessions for people with multiple sclerosis during the COVID-19 pandemic while use of remote technologies for physiotherapy did not change. To ensure the continuity of physiotherapy for PwMS with complex healthcare needs also during pandemics, the provision of guidelines and training in telehealth technologies in professional education becomes crucial.

Littoral chironomids and oligochaetes in the subalpine Lake Maggiore: a first dataset

A dataset of 227 oligochaetes and 373 chironomids occurrence records from the subalpine Lake Maggiore, a large and deep temperate lake in Northern-Western Italy and Switzerland was developed within the Interreg Italy-Switzerland 2014-2020 Parchi Verbano Ticino Project (ID:481668) funded by the European Regional Development Fund (ERDF). The lake belongs to the national (LTER-Italy), European (LTER-Europe) and International (ILTER) long-term ecological research networks. Data were collected during the summer-autumn period in 2019-2021. Chironomids (Insecta, Diptera) and oligochaetes (Annelida, Clitellata) were identified to genus/species gr./species level by the authors. All 600 occurrence records are georeferenced and organised in a standardised Darwin Core Archive format. These data gathered along the littoral areas of Lake Maggiore will contribute to the development of common implementation strategies for shared and sustainable water management level of the lake, with particular reference to the protected natural areas (sites belonging to Natura 2000 network in Italy and to the Emerald Network in Switzerland). The authors strongly believe in the great potential of open access occurrence records in biogeographical studies and ecological research in the context of global environmental changes. For that reason, the dataset has been uploaded to the Global Biodiversity Information Facility (GBIF), an intergovernmental free and open access biodiversity data infrastructure.

Current Management of Patients with RPE65 Mutation Associated Inherited Retinal Degenerations in Europe: Results of a 2-Year Follow-Up Multinational Survey

Introduction: The aim of this study was to evaluate the current management of RPE65 biallelic mutation-associated inherited retinal degeneration (RPE65-IRD) in Europe since market authorization of voretigene neparvovec (VN, LuxturnaTM) in 2018. By July 2022, over 200 patients have been treated outside the USA, of whom about 90% in Europe. We conducted among all centers of the European Vision Institute Clinical Research Network (EVICR.net) and health care providers (HCPs) of the European Reference Network dedicated to Rare Eye Diseases (ERN-EYE) the second multinational survey on management of IRDs in Europe elaborated by EVICR.net with a special focus on RPE65-IRD. Methods: An electronic survey questionnaire with 48 questions specifically addressing RPE65-IRD (2019 survey 35) was developed and sent by June 2021 to 95 EVICR.net centers and 40 ERN-EYE HCPs and affiliated members. Of note, 11 centers are members of both networks. Statistical analysis was performed with Excel and R. Results: The overall response rate was 44% (55/124); 26 centers follow RPE65 biallelic mutation-associated IRD patients. By June 2021, 8/26 centers have treated 57 RPE65-IRD cases (1–19/center, median 6) and 43 planned for treatment (range 0–10/center, median 6). The overall age range was 3–52 years, and on average 22% of the patients did not (yet) qualify for treatment (range 2–60%/center, median 15%). Main reasons were too advanced (range 0–100, median 75%) or mild disease (range 0–100, median 0). Eighty-three percent of centers (10/12) that follow RPE65 mutation-associated IRD patients treated with VN participate in the PERCEIVE registry (EUPAS31153, http://www.encepp.eu/encepp/viewResource.htm?id=37005). Quality of life and full-field stimulus test improvements had the highest scores of the survey-reported outcome parameters in VN treatment follow-up. Conclusion: This second multinational survey on management of RPE65-IRD by EVICR.net centers and ERN-EYE HCPs in Europe indicates that RPE65-IRD might be diagnosed more reliably in 2021 compared to 2019. By June 2021, 8/26 centers reported detailed results including VN treatment. Main reasons for non-treatment were too advanced or mild disease, followed by absence of 2 class 4 or 5 mutations on both alleles or because of a too young age. Patient satisfaction with treatment was estimated to be high by 50% of the centers.

Current Management of Inherited Retinal Degeneration Patients in Europe: Results of a 2-Year Follow-Up Multinational Survey by the European Vision Institute Clinical Research Network – EVICR.net

Introduction: An increasing number of gene-specific therapies are being developed for inherited retinal degenerations (IRDs). Identification of well-characterized patients is an emerging need. We conducted the second multinational survey among the EVICR.net and ERN-EYE members to understand the management and treatment of IRDs in Europe and compared it to the 2019 survey. Methods: An electronic survey questionnaire was developed and sent to 124 clinical centers (25 countries) by June/July 2021. Statistical analysis was performed with Excel and R. Results: The overall response rate was 44% but varied among countries. Only 9% of responding centers do not see IRD patients (2019 survey 14%), 42% follow at least 200 patients per year, 18% follow 500–999, and 2% more than 1,000. Databases exist in 86% of the centers (local 86%; national web based 12%). IRD patients are referred to EVICR.net and ERN-EYE centers mainly by general ophthalmologists, patient self-referral, or medical retina specialists. Most IRD patients are first seen as adults. Signs and symptoms depend on age of onset: in infancy, nystagmus; at older age, night blindness and reduced visual field; reduced visual acuity is described at any age. Comprehensive ophthalmic examination always includes visual acuity and almost always visual field multimodal retinal imaging, electrophysiology, color vision testing, and refraction. Identification of genotypes is successful in 72% of centers in 40–80% of cases (2019 survey 69% of centers). The time for confirmation of the genetic diagnosis varies from 2–4 weeks to 24 months (2019 survey >4 weeks ≤10 years). Genetic testing is covered by public health service in 83%, private health insurance in 29%, research funds in 24%; 5% do not have access to genetic testing (2019 survey 15%). The most striking result is the high increase in the involvement of centers in natural history and gene therapy trials that more than doubled for the latter. Discussion: This second multinational survey on management of IRDs in Europe highlights persistent important differences in the number of IRD patients managed per center, comparable diagnostic work-up, and increasing genotyping in diagnostic laboratories. The important increase in involvement of centers in natural history and gene therapy trials reflects the rapidly evolving field of gene therapy development. The survey provides important follow-up data for researchers, clinicians, caregivers, patient advocate groups, pharmaceutical companies, and investors.

Smart Textiles in Building and Living Applications: WG4 CONTEXT Insight on Elderly and Healthcare Environments

Over the past 30 years, the development of new technologies and especially of smart textiles has unavoidably led to new applications of traditional textiles in the built environment. Depending on special constructional needs (i.e., acoustic insulation, thermal insulation, shading system, etc.) or health monitoring and supporting needs (i.e., for patients with chronical disease, etc.), an increasing number of possible applications has been proposed to improve human well-being. This is especially the case for healthcare environments (like elderly or nursing homes, etc.), but also educational environments (like schools, etc.) where young or old customers can benefit from technological innovation in several ways. As an ongoing activity of WG4 members for the CA17107 “CONTEXT” European research network, this study presents a review on selected applications for building and living solutions, with special attention to healthcare environments, giving evidence of major outcomes and potentials for smart textiles-based products.