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Second, qualitative interviews with patients, family members and HPs will be performed to gain a deeper understanding of care needs identified in the quantitative survey. Third, a model of care will be co\u2010created with input from patients, HPs and other experts. The eHealth enhanced Chronic Care Model will serve as a guiding framework. The new model and corresponding outcome parameters will be refined using a Delphi\u2010study approach to reach consensus on a testable model of care for persons living with SSc. The protocol has received research ethics committee approval in September 2018 by the Swiss Ethics Committee.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>The MANOSS study's participatory approach is essential for contextual fit of the model for patients with SSc in this setting. Subsequent feasibility testing and implementation are planned to evaluate the model's value in relation to health disparities faced by this patient population.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Impact<\/jats:title>\n                    <jats:p>Patients living with this rare disease lack access to coordinated, specialized care and self\u2010management support from qualified HPs. Reengineering of current care, with consideration for technological opportunities, is warranted to meet patients\u2019 and families\u2019 needs.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/jan.14185","type":"journal-article","created":{"date-parts":[[2019,8,27]],"date-time":"2019-08-27T01:49:42Z","timestamp":1566870582000},"page":"3774-3791","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Developing a rare disease chronic care model: Management of systemic sclerosis (MANOSS) study protocol"],"prefix":"10.1111","volume":"75","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8716-9727","authenticated-orcid":false,"given":"Agnes","family":"Kocher","sequence":"first","affiliation":[{"name":"Institute of Nursing Science (INS) Department Public Health (DPH) Faculty of Medicine University of Basel Basel Switzerland"},{"name":"Department of Rheumatology, Immunology and Allergology Inselspital Bern 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