Get 20M+ Full-Text Papers For Less Than $1.50/day. Start a 14-Day Trial for You or Your Team.

Learn More →

HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma

HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used... PURPOSEThe 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.METHODSWe 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.RESULTSAs 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.CONCLUSIONThese 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. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JCO: Clinical Cancer Informatics Wolters Kluwer Health

HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma

Download PDF
9 pages

Loading next page...
 
/lp/wolters-kluwer-health/healthtree-cure-hub-a-patient-derived-patient-driven-clinical-cancer-3FcQywCgNJ
Publisher
Wolters Kluwer Health
Copyright
© 2022 by American Society of Clinical Oncology
eISSN
2473-4276
DOI
10.1200/cci.21.00141
Publisher site
See Article on Publisher Site

Abstract

PURPOSEThe 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.METHODSWe 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.RESULTSAs 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.CONCLUSIONThese 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.

Journal

JCO: Clinical Cancer Informatics – Wolters Kluwer Health

Published: Mar 10, 2022

References

  • Multiple myeloma epidemiology and survival, a unique malignancy
    Kazandjian, D
  • Global burden of multiple myeloma: A systematic analysis for the global burden of disease study 2016
    Cowan, AJ; Allen, C; Barac, A
  • Risk of monoclonal gammopathy of undetermined significance (MGUS) and subsequent multiple myeloma among African American and white veterans in the United States
    Landgren, O; Gridley, G; Turesson, I
  • Genetics of multiple myeloma: Another heterogeneity level?
    Corre, J; Munshi, N; Avet-Loiseau, H
  • Characteristics of exceptional responders to autologous stem cell transplantation in multiple myeloma
    Paquin, A; Visram, A; Kumar, SK
  • Noncompletion and nonpublication of trials studying rare diseases: A cross-sectional analysis
    Rees, CA; Pica, N; Monuteaux, MC
  • 157th ENMC International Workshop: Patient registries for rare, inherited muscular disorders 25–27 January 2008 Naarden, the Netherlands
    Sárközy, A; Bushby, K; Béroud, C
  • Big data vs. clinical trials in HPB surgery
    de Geus, SWL; Sachs, TE; Tseng, JF
  • Management of patients with multiple myeloma beyond the clinical-trial setting: Understanding the balance between efficacy, safety and tolerability, and quality of life
    Terpos, E; Mikhael, J; Hajek, R
  • The International Rare Diseases Research Consortium: Policies and guidelines to maximize impact
    Lochmüller, H; Farnell, JTI; Le Cam, Y
  • North F, Chaudhry R. Apple HealthKit and health app: Patient uptake and barriers in primary care
  • Clinical characteristics of 18 patients with psoriasis and multiple myeloma identified through digital health crowdsourcing
    Jin, JQ; Ahlstrom, JM; Sweeney, NW
  • Information on product use in the design process
    Marinissen, AH; Pollock, CM; Straker, LM
  • Patients with precursor disease exhibit similar psychological distress and mental HRQOL as patients with active myeloma
    Maatouk, I; He, S; Hummel, M
  • HealthTree Patient Portal mediated myeloma patient reported diagnostic imaging and pathology testing
    Sweeney, NW; Ahlstrom, J; Thompson, MA
  • HealthTree Patient Portal mediated myeloma patient-reported vaccination and antibiotic use
    Thompson, MA; Ahlstrom, J; Sweeney, NW
  • Integrative medicine and plasma cell disorders
    Okolo, O; Wertheim, BC; Larsen, A
  • Acute and chronic cancer-related distress among multiple myeloma patients during the COVID-19 pandemic
    Ahlstrom, J; Molina, TH; Sweeney, NW
  • Patient-reported efficacy and toxicity in CAR T-cell therapy for multiple myeloma via Internet-based platforms
    Sweeney, NW; Hernandez, EF; Cole, N
  • Patient-reported experience platform identifies discordance between guidelines and real-world practice: Maintenance therapy for high-risk multiple myeloma
    Sweeney, NW; Goldsmith, SR; Crees, Z
  • Tandem versus single autologous stem cell transplant: A patient-reported outcome
    Molina, TH; Sweeney, NW; Cole, N
  • Telehealth use among multiple myeloma patients during the COVID-19 pandemic
    Sweeney, NW; Goldsmith, SR; Ahlstrom, JM
  • Cancer-related distress among multiple myeloma patients during the COVID-19 pandemic
    Sweeney, NW; Ahlstrom, J
  • Small data challenges of studying rare diseases
    Mitani, AA; Haneuse, S
  • Establishing patient registries for rare diseases: Rationale and challenges
    Boulanger, V; Schlemmer, M; Rossov, S