{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,22]],"date-time":"2026-09-22T13:51:06Z","timestamp":1790085066022,"version":"4.0.1"},"reference-count":19,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2023,1,25]],"date-time":"2023-01-25T00:00:00Z","timestamp":1674604800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Br J Haematol"],"published-print":{"date-parts":[[2023,6]]},"abstract":"<jats:title>Summary<\/jats:title>\n                  <jats:p>National registries are used globally to characterise patient demographics, treatment choices and mortality to inform and improve clinical management. Waldenstr\u00f6m macroglobulinaemia (WM) is a rare, treatment\u2010responsive B\u2010cell lymphoproliferative disorder with diverse clinical features and variable outcomes. To prospectively chart changes in the management of WM in the UK, the Rory Morrison Registry (RMR) was developed to systematically collect real\u2010world data. Here we describe the development of the RMR, demonstrate its feasibility and describe preliminary observations. The RMR was devised as a collaborative project between patients and clinicians, under the auspices of the UK Charity for WM in 2016. Patients may be registered after the point of diagnosis and those with historic diagnosis were also eligible. Data collection fields were compiled by focus groups of clinicians, patients, industry and commissioning partners. The RMR launched in November 2017 and as of March 2022, there were 22 participating centres and 1305 patients registered. Median follow\u2010up was 6.4\u2009years, five\u2010year overall survival 90.7% (95% confidence interval [CI] 88.4%\u201392.5%) and 10\u2010year overall survival 79.3% (95% CI 75.7%\u201382.4%). There has been a clear evolution in treatments including a rapid growth in the use of Bruton's tyrosine kinase inhibitors in relapsed disease since their availability in the UK.<\/jats:p>","DOI":"10.1111\/bjh.18680","type":"journal-article","created":{"date-parts":[[2023,1,26]],"date-time":"2023-01-26T01:35:47Z","timestamp":1674696947000},"page":"905-912","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["The Rory Morrison\n                    <scp>WMUK<\/scp>\n                    Registry for Waldenstr\u00f6m macroglobulinaemia: The growth of a national registry for a rare disorder"],"prefix":"10.1111","volume":"201","author":[{"given":"Encarl","family":"Uppal","sequence":"first","affiliation":[{"name":"University College London Hospitals  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4993-7828","authenticated-orcid":false,"given":"Jahanzaib","family":"Khwaja","sequence":"additional","affiliation":[{"name":"University College London Hospitals  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joshua","family":"Bomsztyk","sequence":"additional","affiliation":[{"name":"University College London Hospitals  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Helen","family":"McCarthy","sequence":"additional","affiliation":[{"name":"University Hospitals Dorset NHS Foundation Trust  Dorset UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jaimal","family":"Kothari","sequence":"additional","affiliation":[{"name":"Oxford University Hospitals NHS Foundation Trust  Oxford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Peter","family":"Walton","sequence":"additional","affiliation":[{"name":"Dendrite Clinical Systems Ltd.  Oxford UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Harriet","family":"Scorer","sequence":"additional","affiliation":[{"name":"WMUK  Cheshire UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charalampia","family":"Kyriakou","sequence":"additional","affiliation":[{"name":"University College London Hospitals  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dima","family":"El\u2010Sharkawi","sequence":"additional","affiliation":[{"name":"Royal Marsden Hospital  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shirley","family":"D'Sa","sequence":"additional","affiliation":[{"name":"University College London Hospitals  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,1,25]]},"reference":[{"key":"e_1_2_11_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-015-0814-3"},{"key":"e_1_2_11_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2352-3026(18)30051-6"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.15965"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2016-01-643569"},{"key":"e_1_2_11_6_1","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2018022962"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.19.02314"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.3324\/haematol.2022.280953"},{"key":"e_1_2_11_9_1","doi-asserted-by":"publisher","DOI":"10.1080\/10428194.2021.1881514"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/jha2.597"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.18036"},{"key":"e_1_2_11_12_1","first-page":"1","article-title":"Patient reported outcomes measures in Waldenstr\u00f6m Macroglobulinaemia: a real\u2010world data analysis from the WMUK Rory Morrison registry","author":"Khwaja JUE","year":"2022","journal-title":"EJHaem"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2017.03.008"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.15634"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2352-3026(18)30087-5"},{"key":"e_1_2_11_16_1","unstructured":"Helen BellAJW HernandezM GrieveR FariaR GibsonL GrimmS.The use of real world data for the estimation of treatment effects in NICE decision making. NICE Decision Support Unit.2016."},{"key":"e_1_2_11_17_1","unstructured":"NICE.Ibrutinib for treating Waldenstrom's macroglobulinaemia TA795.2022."},{"key":"e_1_2_11_18_1","unstructured":"NICE.Zanubrutinib for treating Waldenstrom's macroglobulinaemia TA833.2022."},{"key":"e_1_2_11_19_1","doi-asserted-by":"publisher","DOI":"10.1182\/blood.2020006844"},{"key":"e_1_2_11_20_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1802917"}],"container-title":["British Journal of Haematology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/bjh.18680","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/bjh.18680","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/bjh.18680","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,4,16]],"date-time":"2024-04-16T00:06:55Z","timestamp":1713226015000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/bjh.18680"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,1,25]]},"references-count":19,"journal-issue":{"issue":"5","published-print":{"date-parts":[[2023,6]]}},"alternative-id":["10.1111\/bjh.18680"],"URL":"https:\/\/doi.org\/10.1111\/bjh.18680","archive":["Portico"],"relation":{},"ISSN":["0007-1048","1365-2141"],"issn-type":[{"value":"0007-1048","type":"print"},{"value":"1365-2141","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,1,25]]},"assertion":[{"value":"2022-10-22","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-01-04","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-01-25","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}