Performance of the EULAR Systemic sclerosis Impact of Disease (ScleroID) questionnaire as a patient-reported outcome measure for patients with diffuse systemic sclerosis

Authors: Ulf Mueller-Ladner, Marco Matucci-Cerinic, Oliver Distler, Cosimo Bruni, Otylia Kowal-Bielecka, Kim Fligelstone, Roger Hesselstrand, László Czirják, Carina Mihai, Gunnel Sandqvist, Rucsandra Dobrota, Patricia E Carreira, Ana Maria Gherghe, Tore Kvien, Turid Heiberg, Alexandru Garaiman, Mike Oliver Becker, Annelise Roennow, Ann Tyrrell Kennedy, Chris Denton

Source: RMD Open, Vol 10, Iss 4 (2024)

Subject Terms: Medicine

File Description: electronic resource

Relation: https://rmdopen.bmj.com/content/10/4/e004653.full; https://doaj.org/toc/2056-5933

Access URL: https://doaj.org/article/7b4b4609e7d54da5a3ff297304e83bed

Collaboration between patient organisations and a clinical research sponsor in a rare disease condition: learnings from a community advisory board and best practice for future collaborations

Authors: Ilaria Galetti, Maureen Sauve, Catarina Leite, Joep Welling, Martina Gahlemann, Annelise Roennow, Robert J Riggs, Ann Tyrrell Kennedy, Edith Brown, Alex Gonzalez, Alexandra Paula Portales Guiraud, François Houÿez, Rob Camp, Annie Gilbert, Lizette Moros, Jose Luis Luna Flores, Friedrich Schmidt, Wiebke Sauter, Henrik Finnern

Source: BMJ Open, Vol 10, Iss 12 (2020)

Subject Terms: Medicine

File Description: electronic resource

Relation: https://bmjopen.bmj.com/content/10/12/e039473.full; https://doaj.org/toc/2044-6055

Access URL: https://doaj.org/article/90c0fae509b94a35b5a69e0ab34db997