Benjamin J Livesey, Mihaly Badonyi, Mafalda Dias, Jonathan Frazer, Sushant Kumar, Kresten Lindorff-Larsen, David M McCandlish, Rose Orenbuch, Courtney A Shearer, Lara Muffley, Julia Foreman, Andrew M Glazer, Ben Lehner, Debora S Marks, Frederick P Roth, Alan F Rubin, Lea M Starita, Joseph A Marsh
Guidelines for releasing a variant effect predictor
ArXiv
many rare disease rd patients allogenic transplantation represents effective therapy improving overall survival rates quality life qol globally 1 liver transplants performed rds rare indications however patients carers report unmet needs pathway toward treatmentin education therapeutic measures oftentimes shouldering expertisebuilding responsibility issues exacerbated child patients estimates indicate 6 8 polands population 233 million persons burdened rds potentially face issues work aims identify shortcomings polish policy field educational therapeutic measures rd transplant candidates recipients based solutions introduced pioneers recommendations formulated regarding priority actions analysis national transnational individualcenter programs directed patients path diagnosis life posttransplant conducted investigation uncovered measure gaps addressed national plan rare diseasesin fields patient stakeholder education pre posttransplant psychological care provision specialized center creation integration data scattered among registries national insurers database artificial intelligence ai tool implementation support early diagnostic efforts tailoring patient treatment programs directed rd transplant candidates recipients must aim ensure satisfactory psychosomatic condition patient maintained following procedure therefore lending credence success necessitates early diagnosis schemes personalized medicine multidisciplinary approaches individual achievable big data system creation ai introduction