{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,21]],"date-time":"2026-04-21T23:58:08Z","timestamp":1776815888086,"version":"3.51.2"},"reference-count":34,"publisher":"American Society of Clinical Oncology (ASCO)","issue":"6","content-domain":{"domain":["ascopubs.org"],"crossmark-restriction":true},"short-container-title":["JCO Clinical Cancer Informatics"],"published-print":{"date-parts":[[2022,5]]},"abstract":"<jats:sec><jats:title>PURPOSE<\/jats:title><jats:p>The study of rare diseases, such as multiple myeloma (MM), often experiences unique research hurdles that can delay or prevent lifesaving discoveries. HealthTree Cure Hub is a first-in-class software program designed to overcome these potential research hurdles.<\/jats:p><\/jats:sec><jats:sec><jats:title>METHODS<\/jats:title><jats:p>We assessed whether HealthTree Cure Hub improved four commonly experienced research hurdles such as (1) small numbers of patient accrual to clinical trials and research studies, (2) shallow and isolated data sets, (3) high costs to answer research questions, and (4) lack of long-term follow-up patient data.<\/jats:p><\/jats:sec><jats:sec><jats:title>RESULTS<\/jats:title><jats:p>As of June 2021, HealthTree Cure Hub, with its unique portal features, has attracted 9,225 patients with MM and diverse demographic backgrounds. While completing an online health profile, patients shared comprehensive data, as well as provided consent to contribute data from electronic medical records. Portal use answered research questions using patient-driven real-world data. This also cultivated relationships with patients and established communication channels that enabled continual patient contact to allow for long-term follow-up.<\/jats:p><\/jats:sec><jats:sec><jats:title>CONCLUSION<\/jats:title><jats:p>These results suggest that a patient-driven data capture tool such as HealthTree Cure Hub will help alleviate common research hurdles, which, in turn, will accelerate MM research, develop new hypotheses, and ultimately improve survival.<\/jats:p><\/jats:sec>","DOI":"10.1200\/cci.21.00141","type":"journal-article","created":{"date-parts":[[2022,3,10]],"date-time":"2022-03-10T20:59:35Z","timestamp":1646945975000},"update-policy":"https:\/\/doi.org\/10.1200\/crossmark","source":"Crossref","is-referenced-by-count":3,"title":["HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma"],"prefix":"10.1200","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2317-6207","authenticated-orcid":false,"given":"Nathan W.","family":"Sweeney","sequence":"first","affiliation":[{"name":"MyelomaCrowd by HealthTree, HealthTree Foundation, Lehi, UT"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer M.","family":"Ahlstrom","sequence":"additional","affiliation":[{"name":"MyelomaCrowd by HealthTree, HealthTree Foundation, Lehi, UT"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rafael","family":"Fonseca","sequence":"additional","affiliation":[{"name":"Division of Hematology, Mayo Clinic, Phoenix, AZ"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3971-2393","authenticated-orcid":false,"given":"Faith E.","family":"Davies","sequence":"additional","affiliation":[{"name":"Department of Medicine, Perlmutter Cancer Center, NYU Langone Health, New York, NY"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7930-4610","authenticated-orcid":false,"given":"Michael A.","family":"Thompson","sequence":"additional","affiliation":[{"name":"Aurora Cancer Care, Advocate Aurora Health, Milwaukee, WI"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"233","reference":[{"key":"b1","doi-asserted-by":"publisher","DOI":"10.1053\/j.seminoncol.2016.11.004"},{"key":"b2","volume-title":"Myeloma\u2014Cancer Stat Facts"},{"key":"b3","doi-asserted-by":"publisher","DOI":"10.1001\/jamaoncol.2018.2128"},{"key":"b4","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2005-08-3449"},{"key":"b5","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2014-10-567370"},{"key":"b6","volume-title":"Drugs Approved for Multiple Myeloma"},{"key":"b7","doi-asserted-by":"publisher","DOI":"10.1038\/s41408-020-00353-8"},{"key":"b8","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pmed.1002966"},{"key":"b9","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2008.07.006"},{"key":"b10","doi-asserted-by":"publisher","DOI":"10.1007\/s11605-020-04536-3"},{"key":"b11","volume-title":"Registries for Evaluating Patient Outcomes","author":"Gliklich RE","year":"2014"},{"key":"b12","doi-asserted-by":"publisher","DOI":"10.1038\/s41408-021-00432-4"},{"key":"b13","doi-asserted-by":"publisher","DOI":"10.23970\/AHRQEPCREGISTRIES3ADDENDUM2"},{"key":"b14","doi-asserted-by":"publisher","DOI":"10.1038\/s41431-017-0008-z"},{"key":"b15","volume-title":"The Myeloma Crowd Launches HealthTree\u00ae Aimed at Accelerating a Cure for Multiple Myeloma","author":"Ahlstrom J","year":"2018"},{"key":"b16","volume-title":"Couple Facing Rare Cancer Creates Tech in Hope of Finding Cure","author":"TODAY.com","year":"2019"},{"key":"b17","doi-asserted-by":"publisher","DOI":"10.1089\/tmj.2015.0106"},{"key":"b18","doi-asserted-by":"publisher","DOI":"10.1007\/s13555-020-00416-5"},{"key":"b19","volume-title":"Nail it Then Scale it: The Entrepreneur's Guide to Creating and Managing Breakthrough Innovation","author":"Furr NR","year":"2013","edition":"1"},{"key":"b20","first-page":"78","volume-title":"Ergonomics in a Changing World, Proceedings of the 29th Annual Conference of the Ergonomics Society of Australia","author":"Marinissen AH","year":"1993"},{"key":"b21","doi-asserted-by":"publisher","DOI":"10.1038\/s41408-019-0172-1"},{"key":"b22","volume-title":"An Q&A","author":"The Future of Healthcare AI"},{"key":"b23","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2020.38.15_suppl.e20565"},{"key":"b24","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2020.38.15_suppl.e20567"},{"key":"b25","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2021.39.15_suppl.e20044"},{"key":"b26","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2021.39.15_suppl.e20025"},{"key":"b27","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2021.39.15_suppl.e20024"},{"key":"b28","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2021.39.15_suppl.e20022"},{"key":"b29","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.2021.39.15_suppl.e20026"},{"key":"b30","doi-asserted-by":"publisher","DOI":"10.1158\/1538-7445.AM2021-716"},{"key":"b31","doi-asserted-by":"crossref","DOI":"10.1158\/1557-3265.COVID-19-PO-009","volume":"26","author":"Sweeney NW","year":"2020","journal-title":"Clin Cancer Res"},{"key":"b32","volume-title":"HHS Should Assess the Effectiveness of Its Efforts to Enhance Patient Access to and Use of Electronic Health Information","author":"Health Information Technology"},{"key":"b33","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2020.1965"},{"key":"b34","doi-asserted-by":"publisher","DOI":"10.1007\/s40290-020-00332-1"}],"updated-by":[{"DOI":"10.1200\/cci.22.00053","type":"correction","label":"Correction","source":"publisher","updated":{"date-parts":[[2022,6,1]],"date-time":"2022-06-01T00:00:00Z","timestamp":1654041600000}}],"container-title":["JCO Clinical Cancer Informatics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/ascopubs.org\/doi\/pdfdirect\/10.1200\/CCI.21.00141","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,1,28]],"date-time":"2023-01-28T20:24:02Z","timestamp":1674937442000},"score":1,"resource":{"primary":{"URL":"https:\/\/ascopubs.org\/doi\/10.1200\/CCI.21.00141"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,5]]},"references-count":34,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2022,5]]}},"alternative-id":["10.1200\/CCI.21.00141"],"URL":"https:\/\/doi.org\/10.1200\/cci.21.00141","relation":{"correction":[{"id-type":"doi","id":"10.1200\/CCI.22.00053","asserted-by":"object"}]},"ISSN":["2473-4276"],"issn-type":[{"value":"2473-4276","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,5]]},"assertion":[{"value":"2021-08-18","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2021-11-08","order":1,"name":"revised","label":"Revised","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-01-28","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-03-10","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e2100141"}}