Facts and dates in the history of domestic ethics which have been implemented in the present and could anticipate the future (ethical commentary)

This work is the author's commentary on events and documents that are important for the correct interpretation of the history on bioethics and the search for a moral basis for preventing ethical catastrophes in the future. The real reason for turning to the subject of the article was an in-depth study of the roots of the formation of ethical self-awareness and ethical legal awareness in Russia, which we presented earlier in the previous issue of the journal of Medical Ethics (2021, V. 9, No. 1.). The historical memory of the Nuremberg trial and the realities of the humanitarian catastrophe of the COVID-19 pandemic certainly give a special impetus to the development of this topic. Important issue is a special request of the journal editors to write this particular article. The reason is the author's discovery and presentation of the unique and forgotten documents of extraordinary importance, as well as the strategic focus of the journal's policy on an objective presentation of the facts of national ethics / bioethics in order to form the integrity of the role and influence of Russia and to improve the quality of education in this area.

The delimitation of functional areas in Świętokrzyskie Voivodeship (Poland) concerning social, financial and economic as well as spatial and infrastructural criteria

The article presents current trends in delimiting an area by function and covers various research issues. The main goal of the work was achieved through the author’s method of delimiting functional areas in Świętokrzyskie Voivodeship, taking into account social, financial and economic, and spatial and infrastructural criteria. Among all 18 diagnostic features, the following indicators were the most useful: population density, net migration of permanent commune residents per 1000 population, non-working age population per 100 working-age, number of national economy entities on the REGON register per 1000 working-age population, number of dwellings per 1000 inhabitants, and proportion of commune agricultural land to total area. The starting point for creating a fixed classification for communes was the functional typology developed by J. Bański in 2009 at the special request of the Ministry of Regional Development. As a result of the delimitation, the following functional areas in Świętokrzyskie Voivodeship were designated: urban (5), diversified urban (7), tourist and spa (2), tourism and recreation (7), agricultural and horticultural (4), agricultural production (22), semi-subsistent smallholdings (30) and multifunctional (25).

AB0419 ACCESS TO TREATMENT FOR RAYNAUD’S PHENOMENON AND DIGITAL ULCERS FOR PATIENTS WITH SYSTEMIC SCLEROSIS DOESN’T FOLLOW EULAR/EUSTAR GUIDELINES

Background:Patients with Raynaud’s Phenomenon (RP) from systemic sclerosis (SSc) may experience severe complications. Digital ulcers (DUs), occur in approximately half the patients with SSc, and cause hand dysfunction, severe pain, and decreased quality of life. DUs lead to increased healthcare utilization and systemic economic burden through hospitalizations, ED visits, and ambulatory services (1). However, access to medications such as PDE5 inhibitors and prostacyclins that are within the EULAR/EUSTAR SSc guidelines (2) in a country with global health care but patchy pharmacare such as Canada has not been studied.Objectives:The purpose of this study was to elucidate the access to treatment of medications for RP and DU in patients with SSc in Canadian provinces through identifying the provincial and private insurance coverage of PDE5 inhibitors (PDE5i) and prostanoids, the timelines and procedures of requesting these medications, and the process of administering IV prostanoids if required for patient care.Methods:We designed an online survey and collected data through the Survey Monkey platform. The survey was administered to rheumatologists affiliated with the Canadian Scleroderma Research Group (CSRG) from December 2020 to January 2021. Responders were asked to report if the province or private insurance automatically provided PDE5i for patients with RP and DU or if a dedicated process was required to attain these medications. Additionally, responders were asked to describe the process of administering Iloprost, Epoprostenol and Alprostadil and the barriers inherent to their administration. Of note, there is no DIN number for Iloprost in Canada so every time it is used there must be an application to Health Canada.Results:The survey was completed by 100% of CSRG researchers (17/17), representing 8 provinces in Canada. None of the provincial governments provided coverage for PDE5i without special requests that were adjudicated on a case by case basis with approximately half the provinces paying for PDE5i upon special request if a patient was eligible for provincial drug insurance (ex elderly, youths, low income families). Two provinces, Quebec and Saskatchewan, provided PDE5i “all the time”. Whereas NS, MB, ON, BC, and AB provided them “sometimes”; NFLD provided them “never”. Provincial governments and private insurance fulfilled requests “within 1 month” 62% of the time and the other requests took longer to be answered. Private insurance approved coverage with special request in AB, MB, QC, ON, and NS. Respondents described administration of IV prostanoids as “inconsistent”, requiring “a lot of work”, and that patients in most jurisdictions be admitted as in-patients for provinces to cover these medications.Conclusion:Most jurisdiction within Canada do not provide coverage for PDE5i and the process to obtain access for patients is delayed, non-uniform, and often not approved. Intravenous prostanoid infusions are difficult to obtain and have system barriers. Advocacy and cost effectiveness data should be used to advocate for access to medications that are recommended within SSc recommendations.References:[1]Morrisroe K, et al. Digital ulcers in systemic sclerosis: their epidemiology, clinical characteristics, and associated clinical and economic burden. Arthritis research & therapy. 2019 Dec;21(1):1-2.[2]Kowal-Bielecka O, et al. Update of EULAR recommendations for the treatment of systemic sclerosis. Annals of the rheumatic diseases. 2017 Aug 1;76(8):1327-39.Disclosure of Interests:None declared

Tsar Alexey Mikhailovich’s Constantinople Barmy Revisited

In 1662, the Greek merchant Ivan Yuryev Repetas delivered to Moscow the barmy (regalia collar) (diadem) made in Constantinople on special request from Tsar Alexey Mikhailovich. This wonderful piece of ancient art has survived to this day almost unchanged and is now deposited in the Kremlin Armory. Several generations of scholars have paid attention to the story of the barmy, its creation, artistic design and the significance of the images on enamel medallions. This discussion revealed disagreements among researchers. Not very long ago, there emerged the idea that it is Ivan Yuriev Repeta who was the jeweler and author of the diadem. This opinion is not supported by documents. However, revisiting the written sources not only makes it possible to make additions to the previously known data, but to name the master who made the Constantinople barmy for Alexey Mikhailovich.

O19 A Complex Case of Systemic Lupus Erythematosus with Class IV Lupus Nephritis in a 15-year-old Egyptian Girl

Case report - Introduction We present a case of 15-year-old girl referred to rheumatology clinic by Infectious disease consultant in a private hospital. Her presentation included fever, inflammatory joint pains, butterfly rash and finger pulp infarcts. Her immunology showed highly positive anti DsDNA (>1000), positive anti smith and anti Ro antibodies. This case eludes challenges of management as she went on to develop lupus nephritis. She was treated with IV Methylprednisolone pulse therapy followed by tapering course of steroids, Mycophenolate Mofetil and Hydroxychloroquine. The immunosuppressive treatment including cyclophosphamide and Rituximab could not be given due to lack of approval by her insurance provider. Case report - Case description This 15-yearold Egyptian young girl presented initially in September 2019 to Emergency department with fever and facial rash. This episode was treated as allergic urticaria. Subsequently, she was referred to see the Infectious disease consultant who requested multiple investigations including blood culture, anti DsDNA and ENA antibodies. She presented to Rheumatology clinic with malar rash, mouth ulcers, finger pulp infarcts and joint pains. Her Immunology showed ANA 1:640, Anti DsDNA 1031, Anti Ro 27, Anti Sm 30, Anti nRNP/Sm 28 and elevated Urinary Albumin/Creatinine ratio (27 mg/mmol). A diagnosis of Systemic Lupus Erythematosus with Lupus Nephritis was made. She was initiated on tapering course of steroids (30 mg starting dose) and Plaquanil 400 mg. The follow up visit confirmed improvement (including facial rash) and urine ACR of 17 mg/mmol. The steroids were tapered by 5 mg every 2 weeks and Azathioprine was considered. Unfortunately, she developed renal flare in December 2019 which coincided with reduction in steroid. Urine ACR value 383 mg/mmol, ESR 110 and Anti DsDNA was >1000. The request to offer induction therapy with Rituximab (as she was not keen for Cyclophosphamide) did not receive approval by her insurance company. Her case was reviewed by nephrologist, biopsy was not done at this stage. Her condition was managed with Mycophenolate and Pulse steroid therapy. In February 2020, she had further renal flare (Urine ACR 694 mg/mmol) and that required increase in the dose of steroids. Unfortunately, there was still disapproval by insurance company despite multiple requests. Over the course of next 3 months, there was poor compliance with clinic attendance coinciding with COVID-19pandemic. Her medication included oral Prednisolone 15 mg OD, Mycophenolate 3 gm and Hydroxychloroquine 400 mg. More recently, she has had significant renal flare treated under Nephrologist with Pulse therapy of IV Methylprednisolone with lack of approval to give Rituximab by her insurance provider. Case report - Discussion This is a challenging case of Lupus nephritis in a young adolescent girl seen in a private hospital in Riyadh, Kingdom of Saudi Arabia. She was concerned about her appearance in her first presentation due to disfiguring facial rash. This rash completely resolved, and patient was very satisfied to the extent of some lack of engagement in follow up subsequently. This clinic is based in a busy and popular private hospital in Riyadh where non-Arabic speaking clinician rely on translator to communicate with patient and this can make the consultation further challenging. The clinician must make sure, in brief consultation time, to get the exact message across. My experience did teach me that there were certain times when medications were not taken as intended due to lack of full understanding by the patient. In a private hospital setting, patient can choose their own compliance with clinic attendance as per their convenience and understanding of the condition. This aspect also contributed towards management challenges and control of her disease. The most limiting and frustrating factor to manage this case has also been the lack of engagement and approval by the insurance provider. I made multiple medical requests for their attention and unfortunately all were rejected. The local healthcare system in Kingdom of Saudi Arabia allows expat patients to be seen primarily in private hospitals under the cover of their employer insurance. This also led to lack of sharing expertise and treatment facilities with the regional specialist rheumatology centre, which is mainly designed to cater for local nationals. I am seriously considering making a “special request” for this case to be accepted in the Ministry hospital so Cyclophosphamide and/or Rituximab can be considered. Case report - Key learning points Should we have considered Mycophenolate at very initial presentation and could that have led to different and better clinical outcome?Would renal biopsy change management significantly and how best we can persuade patient and Nephrologist?How else we can engage this young adolescent girl as she was more concerned about her cosmetic appearance and since skin has responded very well, she may not feel too convinced on the need for ongoing treatment and also attending clinic appointment?Perhaps we could have referred her case as a “special request” to local specialist Rheumatology center so she could have been considered for treatment options like Rituximab and cyclophosphamide. The local healthcare in Saudi Arabia permits local nationals to be seen in local and private hospitals whilst expats are catered only in private hospital unless there is exception due to availability of treatment or expertise, where process of acceptance can also be complex and time demanding.

The #GoAtlanticBlue and the All-Atlantic Ocean Youth Ambassador Initiative to raise awareness of and promote the Atlantic Ocean

<p>The Atlantic Ocean Research Alliance was launched on the signing of the Galway Statement on Atlantic Ocean Cooperation between Canada, the European Union and the United States of America in May 2013.  A request to raise the visibility of the Atlantic Ocean was made by the trilateral Galway Statement Implementation Committee.  In answer, the #GoAtlanticBlue campaign was created and piloted in June 2019 alongside World Oceans Day as this highly visible way to raise the profile of the Atlantic Ocean in people’s everyday lives and promote a reconnection with the Atlantic Ocean.</p><p>The #GoAtlanticBlue celebrating the Atlantic Ocean and our connections to it asked people and places to don blue garments, blue face paint, blue wigs and celebrate their connections whether they be livelihoods, inspiration, health and wellbeing or sustainable actions and developments for the ocean that could be celebrated.  At night, the ask was to light up in blue and celebrate these connections.  All were asked to share on social media.  The success of this endeavour will be described and the next level of ambition will be discussed.</p><p>Following on from the June event, in August 2019 an All-Atlantic Ocean Youth Ambassador summer school was held at the special request of the Healthy Oceans & Seas Unit at the European Commission DG Research and Innovation. The All-Atlantic Ocean Youth Ambassador initiative is supported by the All-Atlantic Ocean Research Alliance under the Galway Statement on Atlantic Ocean Cooperation and the Belém Statement on Atlantic Ocean Research & innovation Cooperation. 23 Youth Ambassadors participated in this event from 15 countries along and across the Atlantic Ocean.  Three (3) campaigns types were co-created during this time under the umbrella of #MyAtlanticStory, #GoAtlanticBlue.  These campaigns as well as the All-Atlantic Ocean Youth Ambassador Forum launched in Brussels in February 2020 will be described and their success to date shown.</p>

Estetika Lagu Rincik-rincik dalam Pertunjukan Ronggeng Tayub

AbstrakTujuan dari penelitian ini menjelaskan estetika musikal dalam pertunjukan Ronggeng Tayub, khususnya lagu Rincik-rincik yang dalam sajiannya terdapat perpaduan garap musikal karawitan Sunda dan karawitan Jawa (Banyumasan). Ronggeng Tayub merupakan salah satu bentuk kesenian rakyat di Kabupaten Ciamis dan sekitarnya. Penelaahan dilakukan melalui kajian teknik tabuhan, repertoar lagu, syair lagu, serta menelaah relasi masyarakat dengan seni karawitan dalam kaitannya dengan pertunjukan Ronggeng Tayub di wilayah perbatasan Ciamis-Cilacap. Metode yang digunakan dalam penelitian ini, yaitu metode deskriptif analisis kualitatif. Teknik mengumpulkan data dilakukan melalui observasi lapangan yang didukung dengan wawancara dan perekaman kejadian guna mendapatkan validitas data yang lebih utuh dan menyeluruh. Sajian gending dalam lagu ini menghadirkan kesan kesedarhanaan yang mencerminkan konsep hidup masyarakat pendukungnya. Ronggeng Tayub memiliki bentuk pertunjukan yang sangat merakyat, menyatu, dan komunikatif dengan penontonnya. Lagu Rincik-rincik termasuk pada lagu “pesanan” dari penonton, sajian gendingnya khas, unik, dan dinamis dengan iringan instrumen gamelan salendro yang relatif sederhana.Kata Kunci: estetika musikal, rincik-rincik, ronggeng tayub, kesenian rakyat AbstractThe purpose of this study is to explain the musical aesthetic of the Ronggeng Tayub performance, especially the Rincik-rincik song, which combines Sundanese and Java musical instruments (Banyumasan). Ronggeng Tayub is folk art in District Ciamis and surrounding. The study of Rincik-rincik song includes percussion techniques, song repertoire, song poetry, and the relationship between the community and the Ronggeng Tayub. This study uses a qualitative descriptive-analytical method. The techniques used in this study are observation, interview, and recording in order to obtain a more complete and comprehensive data validity. The performance of gending in Ronggeng Tayub presents the impression of simplicity, reflecting the concept of the life of the people. Ronggeng Tayub has a simple form of performance, blending, and communicative with the audience. Rincik-rincik is one of “special request” song from its audience, by which its gending is unique and dynamic, accompanied by a simple gamelan slendro.Keywords: aesthetic, rincik-rincik, ronggeng tayub, artfolks

Perioperative ultrasound; Fashion, luxury or necessity!

The technique of ultrasound is not new in medicine. Advancement of the technique, portability of the equipment and the desire of the anesthesiologist to reach to a quick diagnosis has made this an essential tool for today’s anesthesiologist. There are many areas during the perioperative period where ultrasound can play an important role in guiding otherwise blind and invasive interventions, diagnosing critical conditions, and assessing for possible anatomic variations that may lead to plan modification. The irrefutable outcome of perioperative use of ultrasound performed by anesthesiologists is increasingly being acknowledged .It has been playing a role in central venous cannulation, epidural space identification, performing peripheral nerve and chronic pain nerve blocks. Transesophageal echocardiography, airway assessment, gastric ultrasound, lung ultrasound and neuro monitoring are some of the newly introduced uses of this modality. As the ultrasound guidance is becoming standard practice of care, anesthesiologists need to develop a thorough understanding of this technology and practical skills by training themselves.Editor’s Note: This editorial was written by the respected Prof. Fazal H. Khan on our special request to complement a research paper being published in this issue [Soliman AM, Samy MA, Heikal AM, El Ramely MA, Kotb TA. Ultrasound-guided assessment of diaphragmatic thickness as an indicator of successful extubation. Anaesth pain & intensive care 2019;23(2):178-185]Citation: Khan FM. Perioperative ultrasound Fashion, luxury or necessity! Anaesth. pain & intensive care 2019;23(2):115-118

Decision-Making at National Level for the Support of Research Infrastructures

The presentation will elaborate on the Dutch decision-making process concerning large-scale research infrastructures at national and European levels. The process involves several stakeholders, from scientists, to funders to Ministries. The Permanent Committee for Scientific Infrastructures (http://www.onderzoeksfaciliteiten.nl/permanente-commissie) plays a high-level decision-making and vision role in this effort. The committee is independent and part of NWO, the Netherland's Research Organisation for Scientific Research, on special request of the Minister of Education, Culture and Science. This level of decision making is necessary to participate at the next level within the vision of the European Roadmap for Research Infrastructures. This Roadmap is set up by the European Strategy Forum for Research Infrastrcutures (ESFRI, https://www.esfri.eu) and is a portfolio of Research Infrastructures regarded as crucial to shape the European Landscape of scientific Research Infrastrcutures. DiSCCo (Distributed System of Scientific Collections), led by Naturalis (Leiden) is a recent and good example of such an infrastructure that gained a place in the European research infrastructure environment connecting 115 Museums, Botanical Gardens and collection-holding Universities in 21 European countries.