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GET /v1/research/project/?format=api&offset=40&ordering=-end_effective
{ "count": 2140, "next": "https://api-test.medunigraz.at/v1/research/project/?format=api&limit=20&offset=60&ordering=-end_effective", "previous": "https://api-test.medunigraz.at/v1/research/project/?format=api&limit=20&offset=20&ordering=-end_effective", "results": [ { "id": 8629, "title": { "de": "Personalisierte Medizin durch Anwendung eines weiterentwickelten Point-of-Care Gerätes in kardiovaskulären Hochrisiko-Patient*innen (PoCCardio) ", "en": "Personalised Medicine by using an Advanced Point-of-Care Tool for Stratified Treatment in High Risk Cardiovascular Patients (PoCCardio) " }, "short": "PoCCardio ", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": null, "begin_effective": "2023-12-01T01:00:00+01:00", "end_planned": null, "end_effective": "2028-11-30T01:00:00+01:00", "assignment": "2025-01-30T15:15:33+01:00", "program": 211, "subprogram": null, "organization": 28392, "category": 10, "type": 10, "partner_function": 4, "manager": 89175, "contact": null, "status": 2, "research": 2, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 10 ], "funder_projectcode": "101095432 ", "ethics_committee": null, "edudract_number": null, "persons": [ "8629-89175-10" ] }, { "id": 7927, "title": { "de": "Personalised Medicine by using an Advanced Point-of-Care Tool for Stratified Treatment in High Risk Cardiovascular Patients (PoCCardio) ", "en": "Personalisierte Medizin durch Anwendung eines weiterentwickelten Point-of-Care Gerätes in kardiovaskulären Hochrisiko-Patient*innen (PoCCardio) " }, "short": "PoCCardio ", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": null, "begin_effective": "2023-12-01T01:00:00+01:00", "end_planned": null, "end_effective": "2028-11-30T01:00:00+01:00", "assignment": "2023-12-13T12:21:49+01:00", "program": 211, "subprogram": null, "organization": 14083, "category": 10, "type": 10, "partner_function": 4, "manager": 100924, "contact": null, "status": 2, "research": 2, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 10 ], "funder_projectcode": "101095432", "ethics_committee": null, "edudract_number": null, "persons": [ "7927-101037-12", "7927-100924-10", "7927-99418-12", "7927-105266-12" ] }, { "id": 7905, "title": { "de": "Biobanking und biomolekulare Ressourcenforschung Infrastruktur Österreich #3", "en": "Biobanking and BioMolecular resources research Infrastructure Austria #3" }, "short": "BBMRI.at#3", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2023-12-01T01:00:00+01:00", "begin_effective": "2023-12-01T01:00:00+01:00", "end_planned": "2028-11-30T01:00:00+01:00", "end_effective": "2028-11-30T01:00:00+01:00", "assignment": "2023-11-24T14:08:12+01:00", "program": null, "subprogram": null, "organization": 14020, "category": 10, "type": 10, "partner_function": 3, "manager": 50496, "contact": null, "status": 2, "research": 10, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 2164 ], "funder_projectcode": null, "ethics_committee": null, "edudract_number": null, "persons": [ "7905-50496-10" ] }, { "id": 7878, "title": { "de": "Personalisierte Medizin durch Anwendung eines weiterentwickelten Point-of-Care Gerätes in kardiovaskulären Hochrisiko-Patient*innen (PoCCardio)", "en": "Personalised Medicine by using an Advanced Point-of-Care Tool for Stratified Treatment in High Risk Cardiovascular Patients (PoCCardio)" }, "short": "PoCCardio", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2023-10-01T02:00:00+02:00", "begin_effective": "2023-12-01T01:00:00+01:00", "end_planned": "2028-09-30T02:00:00+02:00", "end_effective": "2028-11-30T01:00:00+01:00", "assignment": "2023-11-14T15:51:22+01:00", "program": 211, "subprogram": null, "organization": 14080, "category": 10, "type": 10, "partner_function": 3, "manager": 79271, "contact": null, "status": 2, "research": 2, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 10 ], "funder_projectcode": "101095432", "ethics_committee": null, "edudract_number": null, "persons": [ "7878-79271-10" ] }, { "id": 7935, "title": { "de": "European action for the Diagnosis of Early Non-symptomatic Type 1 diabetes For Intervention", "en": "European action for the Diagnosis of Early Non-symptomatic Type 1 diabetes For Intervention" }, "short": "EDENT1FI", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2023-11-01T01:00:00+01:00", "begin_effective": "2023-11-01T01:00:00+01:00", "end_planned": "2028-10-31T01:00:00+01:00", "end_effective": "2028-10-31T01:00:00+01:00", "assignment": "2023-12-15T12:09:06+01:00", "program": 211, "subprogram": null, "organization": 14080, "category": 10, "type": 10, "partner_function": 2, "manager": 51831, "contact": null, "status": 2, "research": 2, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 10 ], "funder_projectcode": "GA101132379", "ethics_committee": null, "edudract_number": null, "persons": [ "7935-51831-10", "7935-50452-12", "7935-56667-12", "7935-90274-12", "7935-97867-12", "7935-99736-12", "7935-81132-12", "7935-102575-12" ] }, { "id": 7792, "title": { "de": "Cluster of Excellence: Mikrobiome steuern planetare Gesundheit", "en": "Cluster of Excellence: Microbiomes drive planetary health" }, "short": null, "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2023-10-01T02:00:00+02:00", "begin_effective": "2023-10-01T02:00:00+02:00", "end_planned": "2028-09-30T02:00:00+02:00", "end_effective": "2028-09-30T02:00:00+02:00", "assignment": "2023-10-02T12:53:05+02:00", "program": 125, "subprogram": null, "organization": 14023, "category": 10, "type": 10, "partner_function": 2, "manager": 90021, "contact": null, "status": 2, "research": 1, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 9 ], "funder_projectcode": "COE 7", "ethics_committee": null, "edudract_number": null, "persons": [ "7792-95832-12", "7792-104024-12", "7792-100806-12", "7792-100035-12", "7792-91470-12", "7792-95972-12", "7792-65966-12", "7792-99612-12", "7792-90021-10", "7792-128495-12", "7792-109121-12", "7792-111471-12", "7792-125318-12", "7792-127414-12", "7792-129735-12", "7792-106195-12" ] }, { "id": 8761, "title": { "de": "Innovative Ansätze für die Implantationsforschung in Gesundheit und Krankheit", "en": "Innovative approaches to implantation research in health and disease" }, "short": "IMPLANTEU", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2025-01-01T01:00:00+01:00", "begin_effective": "2024-10-01T02:00:00+02:00", "end_planned": "2027-12-31T01:00:00+01:00", "end_effective": "2028-09-30T02:00:00+02:00", "assignment": "2025-04-09T16:15:10+02:00", "program": 209, "subprogram": null, "organization": 14017, "category": 10, "type": 10, "partner_function": 1, "manager": 53232, "contact": null, "status": 2, "research": 1, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 10 ], "funder_projectcode": "101169308", "ethics_committee": null, "edudract_number": null, "persons": [ "8761-53232-10" ] }, { "id": 7791, "title": { "de": "Cluster of Excellence: Mikrobiome steuern planetare Gesundheit ", "en": "Cluster of Excellence: Microbiomes drive planetary health" }, "short": null, "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2023-10-01T02:00:00+02:00", "begin_effective": "2023-10-01T02:00:00+02:00", "end_planned": "2027-09-30T02:00:00+02:00", "end_effective": "2028-09-30T02:00:00+02:00", "assignment": "2023-10-02T11:21:30+02:00", "program": 125, "subprogram": null, "organization": 14020, "category": 10, "type": 10, "partner_function": 4, "manager": 50496, "contact": null, "status": 2, "research": 1, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 9 ], "funder_projectcode": "COE 7", "ethics_committee": null, "edudract_number": null, "persons": [ "7791-50496-10" ] }, { "id": 8731, "title": { "de": "Metabolische und epigenetische Regulierung von Th9-Zellen", "en": "Metabolic and epigenetic regulation of Th9 cells" }, "short": null, "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2024-11-01T01:00:00+01:00", "begin_effective": "2025-09-01T02:00:00+02:00", "end_planned": "2027-10-31T02:00:00+02:00", "end_effective": "2028-08-31T02:00:00+02:00", "assignment": "2025-03-17T16:30:44+01:00", "program": 72, "subprogram": null, "organization": 14014, "category": 10, "type": 10, "partner_function": 4, "manager": 78952, "contact": null, "status": 2, "research": 1, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 9 ], "funder_projectcode": "PAT9714324", "ethics_committee": null, "edudract_number": null, "persons": [ "8731-78952-10" ] }, { "id": 8325, "title": { "de": "XR2ESILIENCE - BAHNBRECHENDE XR-TECHNOLOGIE ZUR FÖRDERUNG DER RESILIENZ \r\nUND DER PSYCHISCHEN GESUNDHEIT DES GESUNDHEITSPERSONALS", "en": "XR2ESILIENCE - PIONEERING XR TECHNOLOGY FOR THE PROMOTION OF RESILIENCE \r\nAND MENTAL HEALTH OF THE HEALTHCARE WORKFORCE" }, "short": "XR2ESILIENCE", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2023-12-01T01:00:00+01:00", "begin_effective": "2024-08-01T02:00:00+02:00", "end_planned": "2027-12-31T01:00:00+01:00", "end_effective": "2028-07-31T02:00:00+02:00", "assignment": "2024-08-05T12:40:49+02:00", "program": 211, "subprogram": null, "organization": 29444, "category": 10, "type": 10, "partner_function": 1, "manager": 79733, "contact": null, "status": 2, "research": 3, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 10 ], "funder_projectcode": null, "ethics_committee": null, "edudract_number": null, "persons": [ "8325-79733-10" ] }, { "id": 8390, "title": { "de": "Intermittierendes Fasten und Bewegung bei Typ 2 Diabetes", "en": "Intermittent Fasting and Exercise in Type 2 Diabetes" }, "short": "INTERFAST-3", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2024-06-15T02:00:00+02:00", "begin_effective": "2024-06-15T02:00:00+02:00", "end_planned": "2027-06-14T02:00:00+02:00", "end_effective": "2028-06-14T02:00:00+02:00", "assignment": "2024-09-17T12:19:28+02:00", "program": 108, "subprogram": null, "organization": 14080, "category": 10, "type": 10, "partner_function": 4, "manager": 50838, "contact": null, "status": 2, "research": 4, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 9 ], "funder_projectcode": "KLP3413324", "ethics_committee": null, "edudract_number": null, "persons": [ "8390-50838-10" ] }, { "id": 8609, "title": { "de": "Exogene eletrische und mechanische Stimulation durch eletronische Haut stimuliert die Zellprofileration der oralen Mundschleimhaut", "en": "Exogenous electrical and mechanical motion stimulation by using an electronic skin for support oral cell proliferation." }, "short": null, "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2025-02-01T01:00:00+01:00", "begin_effective": "2025-06-01T02:00:00+02:00", "end_planned": "2028-01-31T01:00:00+01:00", "end_effective": "2028-05-31T02:00:00+02:00", "assignment": "2025-01-21T17:58:12+01:00", "program": null, "subprogram": null, "organization": 14017, "category": 10, "type": 10, "partner_function": 1, "manager": 76930, "contact": null, "status": 2, "research": 1, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 9 ], "funder_projectcode": "ESP6372324", "ethics_committee": null, "edudract_number": null, "persons": [ "8609-76930-10" ] }, { "id": 7529, "title": { "de": "Impfbare Krankheiten bei schwangeren und stillenden Frauen", "en": "Vaccine preventable diseases in pregnant and lactating women" }, "short": null, "url": null, "abstract": { "de": "Given its effectiveness in protecting pregnant women, foetuses and infants from infectious diseases, maternal immunization has gained interest in recent years. Nevertheless, information on the optimal timing for this vaccination strategy is limited by the relatively poor understanding of the immunobiology of vaccine responses in pregnancy and during lactation. Dynamic changes in immune function occur during gestation that may affect vaccine response in pregnant women if vaccination is given at a different timepoint in pregnancy. Additionally, since several recommendations for vaccination in pregnancy or during lactation are currently in place or being made, the question arises whether the administration of different vaccines has an impact on the induction of the antibody-mediated immune responses and whether this possibly also influence the kinetics of these vaccine-induced antibodies. This implies that repeated sampling after vaccination is needed to describe and analyse antibody kinetics. However, the design of maternal immunization studies is typically informed by generic statistical approaches not dealing with questions as to when and how often samples should be taken in order to gather the right amount of information to investigate antibody kinetics.\r\n\r\nThe objectives are 1) to describe and compare kinetics of antibodies to two different vaccines (Tdap, COVID-19) and to investigate potential interactions; 2) to develop a framework to plan maternal immunization studies.\r\n\r\nIn two ongoing trials, serum and breastmilk samples are collected at several timepoints during and after pregnancy. In the Tdap trial, three cohorts of women are included differing in gestational age at which women are vaccinated with Tdap vaccine. In the COVID-19 trial, the effects of vaccinating pregnant and lactating women with a COVID-19 vaccine are investigated. In this project, we will measure antibody titres in blood and breastmilk samples for the vaccine not being the focus of the respective trial, i.e. getting in all samples information on Tdap and COVID-19. We will use mathematical models combined with statistical tools to analyse dynamic immune response and to improve the design of maternal immunization studies.\r\n\r\nThe main innovations are:1) comparing kinetic behaviour of antibodies induced by two different vaccines on several time points in serum and breastmilk; 2) investigating potential interactions of antibodies induced by two vaccines impacting the kinetics over time; 3) development of novel methodology to analyse and plan maternal immunization studies. Within this project, we focus on pertussis and COVID-19 as examples, but outcomes of this project can be applied to other infectious diseases for which vaccines can be administered in pregnancy or during lactation.", "en": "Aufgrund der hohen Anfälligkeit von Schwangeren, Föten und Säuglingen für Infektionskrankheiten hat die Immunisierung von Müttern in den letzten Jahren an Interesse gewonnen. Dennoch ist der optimale Zeitpunkt für eine Impfung in der Schwangerschaft noch immer unbekannt. Außerdem kommt es während der Schwangerschaft zu dynamischen Veränderungen der Immunfunktion, wenn ein Impfstoff zu einem anderen Schwangerschaftsalter verabreicht wird. Dies kann die Reaktion auf den Impfstoff und die Kinetik der durch den Impfstoff induzierten mütterlichen Antikörper im Blut und in der Muttermilch der Schwangeren beeinflussen.\r\n\r\nDa derzeit mehrere Empfehlungen für Impfungen in der Schwangerschaft gelten bzw. ausgesprochen werden, stellt sich außerdem die Frage, ob die Verabreichung verschiedener Impfstoffe in der Schwangerschaft Auswirkungen auf die Immunreaktionen auf diese Impfstoffe hat und möglicherweise eine Wechselwirkung in der Kinetik der durch verschiedene Impfstoffe induzierten Antikörper verursacht.\r\n\r\nIm Rahmen dieses Projekts wollen wir den optimalen Zeitpunkt für die Impfung in der Schwangerschaft bestimmen, die Antikörperkinetik vergleichen und mögliche Wechselwirkungen bei der Immunantwort untersuchen, wenn verschiedene Impfstoffe (z. B. Pertussis, COVID-19) in der Schwangerschaft verabreicht werden. Wir entwickeln konzeptionelle Rahmen, in denen wir statistische Ansätze mit mathematischen Modellen von Infektionskrankheiten kombinieren, um die Analyse und das Design von Studien zur mütterlichen Immunisierung zu verbessern.\r\n\r\nDer Schwerpunkt des Projekts liegt auf Pertussis und COVID-19, aber die Ergebnisse können auch auf andere Infektionskrankheiten angewendet werden, gegen die Impfstoffe in der Schwangerschaft verabreicht werden können." }, "begin_planned": "2023-01-01T01:00:00+01:00", "begin_effective": "2023-06-01T02:00:00+02:00", "end_planned": "2027-12-31T01:00:00+01:00", "end_effective": "2028-05-31T02:00:00+02:00", "assignment": "2023-04-27T14:12:52+02:00", "program": 111, "subprogram": null, "organization": 14026, "category": 10, "type": 10, "partner_function": 1, "manager": 83644, "contact": null, "status": 2, "research": 1, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 9 ], "funder_projectcode": "I6376", "ethics_committee": null, "edudract_number": null, "persons": [ "7529-83644-10" ] }, { "id": 7578, "title": { "de": "STEUERUNG MULTIMODALER THERAPIEN GEGEN MINIMALE RESTERKRANKUNGEN DURCH FLÜSSIGBIOPSIEN", "en": "GUIDING MULTI-MODAL THERAPIES AGAINST MINIMAL RESIDUAL DISEASE BY LIQUID BIOPSIES\r\n" }, "short": "GUIDE.MRD ", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2023-05-01T02:00:00+02:00", "begin_effective": "2023-05-01T02:00:00+02:00", "end_planned": "2027-04-30T02:00:00+02:00", "end_effective": "2028-04-30T02:00:00+02:00", "assignment": "2023-05-19T10:58:07+02:00", "program": null, "subprogram": null, "organization": 14021, "category": 10, "type": 10, "partner_function": 2, "manager": 50899, "contact": null, "status": 2, "research": 2, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 10 ], "funder_projectcode": "101112066", "ethics_committee": null, "edudract_number": null, "persons": [ "7578-50899-10", "7578-76215-12", "7578-104199-12", "7578-119492-12", "7578-121409-12", "7578-120331-12", "7578-116101-12" ] }, { "id": 8764, "title": { "de": "CRP-Sensormessung im Urin mittels smarter Textilien", "en": "Smart textile sensor for analyzing C-reactive protein in urine" }, "short": "UriSens", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2025-01-01T01:00:00+01:00", "begin_effective": "2025-05-01T02:00:00+02:00", "end_planned": "2028-12-31T01:00:00+01:00", "end_effective": "2028-04-30T02:00:00+02:00", "assignment": "2025-04-10T12:52:29+02:00", "program": 60, "subprogram": null, "organization": 14080, "category": 10, "type": 10, "partner_function": 2, "manager": 51809, "contact": null, "status": 2, "research": 2, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 416 ], "funder_projectcode": null, "ethics_committee": null, "edudract_number": null, "persons": [ "8764-51809-10" ] }, { "id": 7710, "title": { "de": "Metabolomics bei PH: Erkennung und Risikovorhersage", "en": "Metabolomics in PH: detection, risk prediction, monitoring" }, "short": "GRAPH-M", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2023-01-01T01:00:00+01:00", "begin_effective": "2024-04-01T02:00:00+02:00", "end_planned": "2027-12-31T01:00:00+01:00", "end_effective": "2028-03-31T02:00:00+02:00", "assignment": "2023-08-08T13:40:35+02:00", "program": 108, "subprogram": null, "organization": 14044, "category": 10, "type": 10, "partner_function": 4, "manager": 54345, "contact": null, "status": 2, "research": 4, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 9 ], "funder_projectcode": "KLI 1153", "ethics_committee": null, "edudract_number": null, "persons": [ "7710-54345-10", "7710-73404-12", "7710-91409-12", "7710-115981-12" ] }, { "id": 7466, "title": { "de": "3D-Druck von ultrafeinen Geweben im Weltraum für Anti-Aging-Lösungen auf der Erde", "en": "3D Printing of Ultra-fideLity tissues using Space for anti-ageing solutions on Earth" }, "short": "PULSE", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2022-11-01T01:00:00+01:00", "begin_effective": "2023-04-01T02:00:00+02:00", "end_planned": "2027-10-31T02:00:00+02:00", "end_effective": "2028-03-31T02:00:00+02:00", "assignment": "2023-03-31T12:24:29+02:00", "program": null, "subprogram": null, "organization": 14010, "category": 10, "type": 10, "partner_function": 2, "manager": 57932, "contact": null, "status": 2, "research": 1, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 10 ], "funder_projectcode": "101099346", "ethics_committee": null, "edudract_number": null, "persons": [ "7466-57932-10" ] }, { "id": 8784, "title": { "de": "Diagnostische Herausforderungen bei der klinischen Alzheimer-Erkennung: Einsatz von blutbasiertem Phospho-Tau 217 zur Verbesserung der diagnostischen Genauigkeit in österreichischen Gedächtnisambulanzen", "en": "Addressing Challenges in Clinical Alzheimer’s Diagnosis: Blood-Based Phospho-Tau 217 to Improve Diagnostic Accuracy in Austrian Memory Clinics" }, "short": null, "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2025-05-01T02:00:00+02:00", "begin_effective": "2025-05-01T02:00:00+02:00", "end_planned": "2028-03-31T02:00:00+02:00", "end_effective": "2028-03-31T02:00:00+02:00", "assignment": "2025-04-15T18:49:25+02:00", "program": null, "subprogram": null, "organization": 14051, "category": 10, "type": 10, "partner_function": 4, "manager": 73547, "contact": null, "status": 2, "research": 2, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 2269 ], "funder_projectcode": null, "ethics_committee": null, "edudract_number": null, "persons": [ "8784-73547-10" ] }, { "id": 8484, "title": { "de": "Genome of Europe\r\n", "en": "Genome of Europe\r\n" }, "short": "GoE", "url": null, "abstract": { "de": null, "en": null }, "begin_planned": "2024-10-01T02:00:00+02:00", "begin_effective": "2024-10-01T02:00:00+02:00", "end_planned": "2027-04-30T02:00:00+02:00", "end_effective": "2028-03-31T02:00:00+02:00", "assignment": "2024-11-08T14:33:55+01:00", "program": 214, "subprogram": null, "organization": 14021, "category": 10, "type": 10, "partner_function": 2, "manager": 50899, "contact": null, "status": 2, "research": 2, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 10, 416 ], "funder_projectcode": "101168231", "ethics_committee": null, "edudract_number": null, "persons": [ "8484-50899-10" ] }, { "id": 8506, "title": { "de": "Medizinische Entscheidungen bei der Multisystematrophie: Entwicklung einer\r\npersonalisierten, bestmöglichen medizinischen Versorgung mit integrierter Telemedizin und\r\nmobiler Palliativversorgung für Personen mit Multisystematrophie- Eine monozentrische,\r\nrandomisierte, offene klinische Studie mit verblindeter Bewertung der motorischen Progression\r\nwährend des Interventionszeitraums", "en": "Medical Decision Making in Multiple System Atrophy: developing personalized best medical care with integrated telemedicine and mobile palliative care for individuals with multiple system atrophy - A monocentric, randomized, open-label clinical study with rater\u0002blinded evaluation of motor progression over the interventional period" }, "short": "MeDeMSA Care", "url": null, "abstract": { "de": "Das Lebensende stellt MSA-Patienten, ihre Betreuer und behandelnden Ärzte vor zahlreiche ethische Dilemmata: Vorenthaltung oder Entzug von Medikamenten, Nahrungsverweigerung vs. Gastrostomie, invasive Beatmung, Anordnung der Nicht-Wiederbelebung. \r\nAdvanced Care Planning (ACP) ist ein wichtiger fortlaufender Kommunikationsprozess, bei dem Patienten das klinische Team über ihre Werte, Ziele und Präferenzen bei der medizinischen Behandlung während schwerer und chronischer Krankheiten informieren können. ACP ist ein Instrument zur Förderung der Autonomie von Patienten und ihres individuellen Konzepts von Lebensqualität (QoL), aber die ethische Perspektive wurde in der besonderen Situation von Menschen, die mit MSA leben, noch nicht systematisch in den Blick genommen.\r\nDie wichtigsten Forschungsfragen in diesem Projekt sind: Welche Wünsche und Vorstellungen haben Menschen mit MSA von einem würdigen Lebensende? Wie ist es möglich, die Lebensqualität dieser Menschen und ihrer Betreuer zu verbessern?\r\nUm diese Fragen zu beantworten, werden Menschen mit MSA und ihre Betreuer, die für die Interventionsstudie MeDeMSA PA3 rekrutiert wurden, zu halbstrukturierten Interviews zu Beginn der Studie und 12 Monate nach den Interventionsmaßnahmen eingeladen (Kallio, Pietilä, Johnson, & Kangasniemi, 2016). \r\nZiel ist es, die Präferenzen der Patienten und des Pflegepersonals in Bezug auf die Beteiligung an Entscheidungen in der Gesundheitsversorgung zu bewerten, welche Art der Informationsvermittlung für ihren Entscheidungsprozess relevant ist, wie sie Telemedizin und mobile Palliativversorgung wahrnehmen, deren rechtliche und regulatorische Aspekte und schließlich ihre Sicht auf die Arzt-Patienten-Beziehung und ihr Konzept der Lebensqualität, das für die ACP wesentlich ist.\r\nUm diese Ziele zu erreichen, sind folgende Arbeitsschritte geplant: i. Eine systematische Übersicht über den ethischen und Stand der Technik in Bezug auf die gemeinsame Entscheidungsfindung, ethische Richtlinien, ACP, Gesetze und Vorschriften in Bezug auf Lebensende und Palliativversorgung bei neurodegenerativen Erkrankungen; ii. eine Umfrage zum Autonomie-Präferenz-Index bei Menschen mit MSA, die in PA3 rekrutiert wurden, und deren Betreuer; iii. ein dynamischer Beitrag zu den klinischen MeDeMSA Sitzungen des klinischen MeDeMSA-Ausschusses; iv. eine eingehende Beschäftigung mit der Telemedizin für Menschen mit MSA und die Bewertung ihrer und ethischen Aspekte und die Entwicklung eines bioethischen Rahmens und von Aufklärungsmaterial für MSA-Patienten und ihre Betreuer. In ständiger enger Zusammenarbeit mit den anderen PA der MeDeMSA RG ist es das Ziel einen bioethischen Rahmen für patientenzentrierte medizinische Entscheidungen im MeDeMSA-Versorgungskreis zu schaffen.", "en": "End of life challenges MSA patients, their caregivers and treating physicians with many ethical dilemmas: withholding or withdrawing medications, food refusal vs. gastrostomy feeding, invasive ventilation, the do\u0002not-resuscitate order. \r\nAdvanced care planning (ACP) is an important ongoing process of communication, where patients can inform the clinical team about their values, goals and preferences in medical treatment during serious and chronic illness. ACP is an instrument to promote autonomy of patients and their individual concept of quality of life (QoL), but the ethical perspective has not been systematically focused on in the peculiar setting of people living with MSA yet.\r\nThe main research questions in this PA are: what are the wishes and perceptions of a decent end-of-life for people living with MSA? How is it possible to improve the QoL of these people and their caregivers?To answer these questions, people with MSA and their care-givers recruited in the interventional trial of MeDeMSA PA3 will be invited to join semi-structured interviews at the study begin and 12 months into the interventional procedures (Kallio, Pietilä, Johnson, & Kangasniemi, 2016). \r\nThe aim is to evaluate the patients’ and caregivers’ preferences for involvement in health-care decisions, which kind of information communication is \r\nrelevant for their decision-making process, which is their perception of telemedicine and mobile palliative care, the legal and regulatory aspects thereof and, ultimately, their perspectives on the patient–physician relationship and their concept of QoL, which is essential for ACP.\r\nTo achieve these goals the following worksteps are planned: i. A systematic review of the ethical and regulatory state of the art on shared-decision making, ethical guidelines, ACP, laws and regulations related to end-of life and palliation in neurodegenerative disorders; ii. an Autonomy Preference Index survey of people with MSA recruited in PA3 and their care-givers; iii. a dynamic contribution to the clinical MeDeMSA board meetings; iv. an in-depth focus on telemedicine for people with MSA and the assessment of its regulatory and ethical aspects and v. the development of a bioethical framework and educational material for MSA patients and their caregivers. In permanent close cooperation with the other PA of the MeDeMSA RG, the aim of PA5 is to establish a bioethical framework for patient-centered medical decisions in the MeDeMSA circle of care." }, "begin_planned": "2024-10-01T02:00:00+02:00", "begin_effective": "2024-10-01T02:00:00+02:00", "end_planned": "2028-03-31T02:00:00+02:00", "end_effective": "2028-03-31T02:00:00+02:00", "assignment": "2024-11-19T16:44:54+01:00", "program": 113, "subprogram": null, "organization": 14051, "category": 10, "type": 10, "partner_function": 4, "manager": 50172, "contact": null, "status": 2, "research": 2, "grant": 10, "event": null, "study": null, "language": null, "funders": [ 9 ], "funder_projectcode": "FG 2705 - B ", "ethics_committee": null, "edudract_number": null, "persons": [ "8506-50172-10" ] } ] }