1 Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Dartmouth College, 35 Centerra Parkway, Suite 300, Lebanon, NH 03766, USA Dartmouth-Hitchcock Health, Lebanon, NH, USA [email protected].
2 Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Sweden.
3 Rare Diseases Sweden, Stockholm, Sweden.
4 Genia, Stockholm, Sweden Hansen Law, Stockholm, Sweden.
5 Dartmouth Institute for Health Policy and Clinical Practice, Geisel School of Medicine, Dartmouth College, 35 Centerra Parkway, Suite 300, Lebanon, NH 03766, USA.
6 Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Sweden Quality Register Centre, Stockholm, Sweden.