{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,6]],"date-time":"2025-11-06T20:08:13Z","timestamp":1762459693944,"version":"build-2065373602"},"reference-count":15,"publisher":"MDPI AG","issue":"1","license":[{"start":{"date-parts":[[2019,1,29]],"date-time":"2019-01-29T00:00:00Z","timestamp":1548720000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJNS"],"abstract":"<jats:p>This discussion paper has been written to show the unique contribution and added value that Patient Organisations can give to the development and improvement of newborn screening programmes for sickle cell disorder (SCD) and other haemoglobinopathies in Europe. As an example, the action of the Sickle Cell Society (SCS) in partnership with statutory organisations in the U.K., such as the National Health Service (NHS) Sickle Cell and Thalassaemia Screening Programme (NHS SCT SP), will be described.<\/jats:p>","DOI":"10.3390\/ijns5010012","type":"journal-article","created":{"date-parts":[[2019,1,29]],"date-time":"2019-01-29T11:27:52Z","timestamp":1548761272000},"page":"12","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Improving Screening Programmes for Sickle Cell Disorders and Other Haemoglobinopathies in Europe: The Role of Patient Organisations"],"prefix":"10.3390","volume":"5","author":[{"given":"John","family":"James","sequence":"first","affiliation":[{"name":"Sickle Cell Society, London NW10 4UA, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elizabeth","family":"Dormandy","sequence":"additional","affiliation":[{"name":"Sickle Cell Society, London NW10 4UA, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2019,1,29]]},"reference":[{"unstructured":"(2019, January 26). Association Fran\u00e7aise pour le D\u00e9pistage et la Pr\u00e9vention des Handicaps de l\u2019Enfant, Bilan d\u2019activit\u00e9 2016. Available online: http:\/\/www.afdphe.org\/sites\/default\/files\/bilan_afdphe_2016.pdf.","key":"ref_1"},{"unstructured":"NHS Sickle Cell and Thalassaemia Screening Programme (2019, January 26). Data report 2016 to 2017: Trends and Performance Analysis, Available online: https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/713120\/SCT_data_report_2016_to_2017.pdf.","key":"ref_2"},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"534","DOI":"10.1111\/bjh.15596","article-title":"Sickle cell screening in Europe: The time has come","volume":"183","author":"Shook","year":"2018","journal-title":"Br. J. Haematol."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"648","DOI":"10.1111\/bjh.15600","article-title":"Newborn screening for sickle cell disease in Europe: Recommendations from a Pan-European Consensus Conference","volume":"183","author":"Lobitz","year":"2018","journal-title":"Br. J. Haematol."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"749","DOI":"10.1542\/peds.81.6.749","article-title":"Newborn screening for sickle cell disease: Effect on mortality","volume":"81","author":"Vichinsky","year":"1988","journal-title":"Pediatrics"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"905","DOI":"10.3324\/haematol.10937","article-title":"Clinical outcomes in children with sickle cell disease living in England: A neonatal cohort in East London","volume":"92","author":"Telfer","year":"2007","journal-title":"Haematologica"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"927","DOI":"10.1111\/bjh.14015","article-title":"Improvement of medical care in a cohort of newborns with sickle-cell disease in North Paris: Impact of national guidelines","volume":"173","author":"Couque","year":"2016","journal-title":"Br. J. Haematol."},{"key":"ref_8","first-page":"648","article-title":"Evaluation of newborn sickle cell screening programme in England: 2010\u20132016","volume":"103","author":"Streetly","year":"2018","journal-title":"Arch. Dis. Child."},{"unstructured":"(2019, January 26). Catherine Coppinger, Available online: https:\/\/phescreening.blog.gov.uk\/2016\/09\/01\/weve-helped-thousands-of-babies-during-10-years-of-newborn-screening-for-sickle-cell-disease\/.","key":"ref_9"},{"unstructured":"(2019, January 26). Film: The Family Legacy. Available online: https:\/\/www.sicklecellsociety.org\/resource\/the-family-legacy\/.","key":"ref_10"},{"unstructured":"(2019, January 29). Sickle Cell Society: Resources. Available online: https:\/\/www.sicklecellsociety.org\/resources\/.","key":"ref_11"},{"unstructured":"(2019, January 28). Sickle Cell Disease: Description in Brief, Available online: https:\/\/www.gov.uk\/government\/publications\/sickle-cell-disease-description-in-brief.","key":"ref_12"},{"unstructured":"(2019, January 26). All-Party Parliamentary Group on Sickle Cell and Thalassaemia. Available online: https:\/\/publications.parliament.uk\/pa\/cm\/cmallparty\/register\/sickle-cell-and-thalassaemia.htm.","key":"ref_13"},{"unstructured":"(2019, January 26). Standards for Clinical Care of Adults with Sickle Cell Disease in the UK-2018. Available online: https:\/\/www.sicklecellsociety.org\/resource\/sicklecellstandards\/.","key":"ref_14"},{"unstructured":"(2019, January 26). Parents\u2019 Stories. Available online: https:\/\/www.sicklecellsociety.org\/resource\/parents-stories\/.","key":"ref_15"}],"container-title":["International Journal of Neonatal Screening"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2409-515X\/5\/1\/12\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T12:29:34Z","timestamp":1760185774000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2409-515X\/5\/1\/12"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2019,1,29]]},"references-count":15,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2019,3]]}},"alternative-id":["ijns5010012"],"URL":"https:\/\/doi.org\/10.3390\/ijns5010012","relation":{},"ISSN":["2409-515X"],"issn-type":[{"type":"electronic","value":"2409-515X"}],"subject":[],"published":{"date-parts":[[2019,1,29]]}}}