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Standardising an outcome measure to assess symptoms most important to patients should help determine the impact of interventions. This Delphi study aims to reach a consensus with stakeholders on the core outcome set for children and adults with HSD\/hEDS. A three-round modified Delphi consensus study with a follow-up consensus meeting was used. Stakeholder groups consisted of (1) individuals with HSD\/hEDS; (2) family\/friends\/carers and (3) healthcare professionals. Participants could belong to more than one stakeholder group. They rated 74 symptoms using a 9-point Likert scale: 1 \u201cnot important to 9 \u201ccritically important\u201d. Symptoms achieving a consensus rating of\u2009\u2265\u200970.0% critical importance across all groups were included. In Round 1, 766 responses were received from 600 participants, reducing to 566 responses from 438 participants by Round 3, with 53 participating in the consensus meeting. Overall, 30 symptoms met the\u2009\u2265\u200970.0% critically important threshold to be included in the final core outcome set. These were categorised under the specialties of musculoskeletal and orthopaedics, social, pain, gynaecology and urology, negative affect, neurological, gastrointestinal and \u201cother\u201d. This study is the first to identify by consensus the core outcome set to be measured for patients with HSD\/hEDS. The importance of these outcomes was confirmed by individuals living with the condition, their family, friends, carers and relevant healthcare professionals. Trial registration: IRAS ID: 326,855; East Midlands \u2014 Leicester South REC (reference: 23\/EM\/0143); Protocol registered with the COMET Initiative. <jats:table-wrap><jats:table><jats:tbody>\n                    <jats:tr>\n                      <jats:td align=\"left\" colspan=\"2\">Key Points<jats:italic>\u2022 There is a lack of standardised outcome measure for HSD\/hEDS research studies due to the heterogeneity of symptom presentations.<\/jats:italic><jats:italic>\u2022 Symptoms across musculoskeletal and orthopaedics, social, pain, gynaecology and urology, negative affect, neurological, gastrointestinal and \u201cother\u201d specialties were identified as the core outcome set defined as<\/jats:italic>\u2009\u2265\u2009<jats:italic>70.0% critically important to measure for individuals with HSD\/hEDS.<\/jats:italic><jats:italic>\u2022 There were a significant number of symptoms, widely recognised in the literature to be comorbid to HSD\/hEDS, that reached a critical importance threshold of 50.0\u201369.9%, restricting the core outcome set to only those that met 70% or above may be limiting.<\/jats:italic><\/jats:td>\n                    <\/jats:tr>\n                  <\/jats:tbody><\/jats:table><\/jats:table-wrap><\/jats:p>","DOI":"10.1007\/s10067-024-07172-3","type":"journal-article","created":{"date-parts":[[2024,10,9]],"date-time":"2024-10-09T09:01:47Z","timestamp":1728464507000},"page":"3951-3961","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Defining a core outcome set for hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome: A Delphi consensus study"],"prefix":"10.1007","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-9462-4425","authenticated-orcid":false,"given":"Natalie L.","family":"Clark","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7181-738X","authenticated-orcid":false,"given":"Melissa","family":"Johnson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5452-8578","authenticated-orcid":false,"given":"Amar","family":"Rangan","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7976-2416","authenticated-orcid":false,"given":"Lucksy","family":"Kottam","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrea","family":"Hogarth","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Scott","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6548-7441","authenticated-orcid":false,"given":"Katherine","family":"Swainston","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,10,9]]},"reference":[{"key":"7172_CR1","doi-asserted-by":"publisher","first-page":"1785","DOI":"10.1007\/s00296-021-04968-3","volume":"41","author":"B Aubry-Rozier","year":"2021","unstructured":"Aubry-Rozier B, Schwitzguebel A, Valerio F, Tanniger J, Paquier C, Berna C, Hugle T, Benaim C (2021) Are patients with hypermobile Ehlers-Danlos syndrome or hypermobility spectrum disorder so different? 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