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A comparison cohort matched to individuals with NF1 on sex and date of birth was identified in the Civil Registration System (n=20\u2009132).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Findings to date<\/jats:title>\n                    <jats:p>All cohort members were linked to the unique Danish registries to obtain information on hospital contacts, birth outcomes, education and partnership. A questionnaire was completed by 244 of the 629 adult cohort members with NF1 registered in the RAREDIS Database to evaluate the psychosocial and emotional burden. Further, neuropsychological tests were performed on 103 adult cohort members with NF1 and 38 adult population comparisons. To date, six studies have been published. Individuals with NF1 had an increased risk for (1) hospitalisation for disorders affecting all organ systems of the body throughout all decades of life, (2) psychiatric disorders, (3) attaining a short or medium long education and (4) not forming a life partner. Women with NF1 had an increased risk for spontaneous abortions and stillbirths. Finally, adults with NF1 had an impaired quality of life and a high need for professional support for physical, psychological and work-related problems, which was partly associated with disease severity and visibility.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Future plans<\/jats:title>\n                    <jats:p>The cohort will regularly be updated with newly diagnosed patients in the RAREDIS Database as well as with outcome information in the Danish registries. New studies are in progress to assess other medical and socioeconomic dimensions of living with NF1.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2022-065340","type":"journal-article","created":{"date-parts":[[2022,9,20]],"date-time":"2022-09-20T12:20:30Z","timestamp":1663676430000},"page":"e065340","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":14,"title":["Cohort profile: life with neurofibromatosis 1 \u2013 the Danish NF1 cohort"],"prefix":"10.1136","volume":"12","author":[{"given":"Karoline","family":"Doser","sequence":"first","affiliation":[{"name":"Childhood Cancer Research Group, Danish Cancer Society Research Center, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hanne","family":"Hove","sequence":"additional","affiliation":[{"name":"Center for Rare Diseases, Department of Pediatrics and Adolescents, Rigshospitalet, Copenhagen, Denmark"},{"name":"The RAREDIS 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Aagaard","family":"Doherty","sequence":"additional","affiliation":[{"name":"Childhood Cancer Research Group, Danish Cancer Society Research Center, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jens Richardt","family":"M\u00f8llegaard Jepsen","sequence":"additional","affiliation":[{"name":"Center for Neuropsychiatric Schizophrenia Research and Center for Clinical Intervention, Mental Health Services, Copenhagen University Hospital Glostrup, Glostrup, Denmark"},{"name":"Child and Adolescent Mental Health Center, Mental Health Services, Copenhagen University Hospital Glostrup, Glostrup, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John J","family":"Mulvihill","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Oklahoma, Oklahoma City, Oklahoma, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jeanette 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