This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Gosling SD, Sandy CJ, John OP, Potter J. Wired but not WEIRD: The promise of the Internet in reaching more diverse samples. Behav Brain Sci 2010; 33: 94-95. doi:10.1017/S0140525X10000300.GoslingSDSandyCJJohnOPPotterJ.Wired but not WEIRD: The promise of the Internet in reaching more diverse samples. Behav Brain Sci2010; 33: 94-95. doi:10.1017/S0140525X10000300.Open DOISearch in Google Scholar
Behrend TS, Sharek DJ, Meade AW, Wiebe EN. The viability of crowdsourcing for survey research. Behav Res Methods 2011; 43: 800-813. doi: 10.3758/s13428-011-0081-0.BehrendTSSharekDJMeadeAWWiebeEN.The viability of crowdsourcing for survey research. Behav Res Methods2011; 43: 800-813. doi: 10.3758/s13428-011-0081-0.Open DOISearch in Google Scholar
Wang RT, Silverstein Fadlon CA, Ulm JW, et al. Online self-report data for Duchenne muscular dystrophy confirms natural history and can be used to assess for therapeutic benefits. PloS Curr 2014; 17:6. doi:10.1371/currents. md.e1e8f2be7c949f9ffe81ec6fca1cce6a.WangRTSilverstein FadlonCAUlmJWOnline self-report data for Duchenne muscular dystrophy confirms natural history and can be used to assess for therapeutic benefits. PloS Curr2014; 17:6. doi:10.1371/currents.md.e1e8f2be7c949f9ffe81ec6fca1cce6a.Open DOISearch in Google Scholar
Richesson RL, Rozenblit L, Vehik K, Tcheng JE. Patient registries for clinical research. In: Richesson RL, Andrews JE, Fultz Hollis K (eds). Clinical Research Informatics. Springer, Cham; 2023: 231-52. Health Informatics. Available at https://doi.org/10.1007/978-3-031-27173-1_13.RichessonRLRozenblitLVehikKTchengJE.Patient registries for clinical research. In: RichessonRLAndrewsJEFultz HollisK (eds). Clinical Research Informatics. Springer, Cham; 2023: 231-52. Health Informatics. Available at https://doi.org/10.1007/978-3-031-27173-1_13.Search in Google Scholar
van Gelder MMHJ, Schouten NPE, Merkus PJFM, et al. Using web-based questionnaires and obstetric records to assess general health characteristics among pregnant women: A validation study. J Med Internet Res 2015; 17(6): e149. doi:10.2196/jmir.3847.van GelderMMHJSchoutenNPEMerkusPJFMUsing web-based questionnaires and obstetric records to assess general health characteristics among pregnant women: A validation study. J Med Internet Res2015; 17(6): e149. doi:10.2196/jmir.3847.Open DOISearch in Google Scholar
Shin D, Chung H, Weatherspoon L, Son WO. Validity of prepregnancy weight status estimated from self-reported height and weight. Matern Child Health J 2014; 18(7): 1667-74. doi: 10.1007/s10995-013-1407-6.ShinDChungHWeatherspoonLSonWO.Validity of prepregnancy weight status estimated from self-reported height and weight. Matern Child Health J2014; 18(7): 1667-74. doi: 10.1007/s10995-013-1407-6.Open DOISearch in Google Scholar
Beauchet O, Launay CP, Merjagnan C, et al. Quantified self and geriatric assessment: Older adults are able to evaluate their own health and functional status. Plus One. 2014;9(6):e100636. doi: 10.1371/journal.pone.0100636.BeauchetOLaunayCPMerjagnanCQuantified self and geriatric assessment: Older adults are able to evaluate their own health and functional status. Plus One. 2014;9(6):e100636. doi: 10.1371/journal.pone.0100636.Open DOISearch in Google Scholar
Huybrechts CF, Mikkelsen EM, Christensen T, et al. A successful implementation of e-epidemiology: The Danish pregnancy planning study, “Snart-Gravid.” Eur J Epidemiol 2010; 25(5): 297-304. doi: 10.1007/s10654-010-9431-y.HuybrechtsCFMikkelsenEMChristensenTA successful implementation of e-epidemiology: The Danish pregnancy planning study, “Snart-Gravid.” Eur J Epidemiol2010; 25(5): 297-304. doi: 10.1007/s10654-010-9431-y.Open DOISearch in Google Scholar
Ye F, Moon DH, Carpenter WR, et al. Comparison of patient report and medical records of comorbidities: Results from a population-based cohort of patients with prostate cancer. JAMA Oncol 2017; 3(8): 1035-42. doi:10.1001/jamaoncol.2016.6744.YeFMoonDHCarpenterWRComparison of patient report and medical records of comorbidities: Results from a population-based cohort of patients with prostate cancer. JAMA Oncol2017; 3(8): 1035-42. doi:10.1001/jamaoncol.2016.6744.Open DOISearch in Google Scholar
Samalik JM, Goldberg CS, Modi ZJ, et al. Discrepancies in race and ethnicity in the electronic health record compared to self-report. J Racial Ethn Health Disparities 2023; 10(6): 2670-75. doi: 10.1007/s40615-022-01445-w.SamalikJMGoldbergCSModiZJDiscrepancies in race and ethnicity in the electronic health record compared to self-report. J Racial Ethn Health Disparities2023; 10(6): 2670-75. doi: 10.1007/s40615-022-01445-w.Open DOISearch in Google Scholar
Lofters A, Vahabi M, Glazier RH. The validity of self-reported cancer screening history and the role of social disadvantage in Ontario, Canada. BMC Publ Health 2015; 15: 28. doi: 10.1186/s12889-015-1441-yLoftersAVahabiMGlazierRH.The validity of self-reported cancer screening history and the role of social disadvantage in Ontario, Canada. BMC Publ Health2015; 15: 28. doi: 10.1186/s12889-015-1441-yOpen DOISearch in Google Scholar
Halonen P, Jämsen E, Enroth L, Jylhä M. Agreement between self-reported information and health register data on chronic diseases in the oldest old. Clin Epidemiol 2023; 15: 785-79. doi: 10.2147/CLEP.S410971.HalonenPJämsenEEnrothLJylhäM.Agreement between self-reported information and health register data on chronic diseases in the oldest old. Clin Epidemiol2023; 15: 785-79. doi: 10.2147/CLEP.S410971.Open DOISearch in Google Scholar
Mannion C, Hughes J, Moriarty F, et al. Agreement between self-reported morbidity and pharmacy claims data for prescribed medications in an older community-based population. BMC Geriatrics 2020; 20(1): 283. doi: 10.1186/s12877-020-01684-8.MannionCHughesJMoriartyFAgreement between self-reported morbidity and pharmacy claims data for prescribed medications in an older community-based population. BMC Geriatrics2020; 20(1): 283. doi: 10.1186/s12877-020-01684-8.Open DOISearch in Google Scholar
Center for Disease Control (CDC); Universal Data Collection (UDC) System. Last reviewed: June 9, 2021. Available at: https://archive.cdc.gov/#/details?url=https://www.cdc.gov/ncbddd/blooddisorders/udc/index.htmlCenter for Disease Control (CDC); Universal Data Collection (UDC) System. Last reviewed: June 9, 2021. Available at: https://archive.cdc.gov/#/details?url=https://www.cdc.gov/ncbddd/blooddisorders/udc/index.htmlSearch in Google Scholar
Center for Disease control (CDC) Community Counts Data for people with inherited bleeding disorders. Available at: https://www.cdc.gov/ncbddd/hemophilia/communitycounts/about.html.Center for Disease control (CDC)Community Counts Data for people with inherited bleeding disorders. Available at: https://www.cdc.gov/ncbddd/hemophilia/communitycounts/about.html.Search in Google Scholar
American Thrombosis and Hemostasis Network. ATHNdataset. Available at: https://athn.org/what-we-do/national-projects/athndataset.html.American Thrombosis and Hemostasis Network. ATHNdataset. Available at: https://athn.org/what-we-do/national-projects/athndataset.html.Search in Google Scholar
Baker J, Crudder SO, Riske B, et al. A model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders. Am J Publ Health 2011; 95(11): 1910-1916. doi: 10.2105/AJPH.2004.051318.BakerJCrudderSORiskeBA model for a regional system of care to promote the health and well-being of people with rare chronic genetic disorders. Am J Publ Health2011; 95(11): 1910-1916. doi: 10.2105/AJPH.2004.051318.Open DOISearch in Google Scholar
Vázquez E, Kim M, Santaella ME. Lived experiences experts: A name created by us for us. Expert Rev Hematol 2023; 16(supp1): 7-11. doi: 10.1080/17474086.2023.2178410.VázquezEKimMSantaellaME.Lived experiences experts: A name created by us for us. Expert Rev Hematol2023; 16(supp1): 7-11. doi: 10.1080/17474086.2023.2178410.Open DOISearch in Google Scholar
National Bleeding Disorders Foundation (NBDF). Mission Statement. Available at: https://www.bleeding.org/who-we-are/our-story/mission-historyNational Bleeding Disorders Foundation (NBDF). Mission Statement. Available at: https://www.bleeding.org/who-we-are/our-story/mission-historySearch in Google Scholar
National Bleeding Disorder Foundation (NBDF). Fund your research. Available at: https://www.bleeding.org/research/fund-your-research.National Bleeding Disorder Foundation (NBDF). Fund your research. Available at: https://www.bleeding.org/research/fund-your-research.Search in Google Scholar
National Bleeding Disorder Foundation (NBDF). NBDF-Takeda Clinical Fellowship Program. Available at: https://www.bleeding.org/healthcare-professionals/education-resources/nbdf-takeda-clinical-fellowship-program.National Bleeding Disorder Foundation (NBDF). NBDF-Takeda Clinical Fellowship Program. Available at: https://www.bleeding.org/healthcare-professionals/education-resources/nbdf-takeda-clinical-fellowship-program.Search in Google Scholar
Nurse’s Health Study. Brigham and Women’s Hospital, Harvard Medical School, Harvard T.H. Chan School of Public Health. 2016. Available at: https://nurseshealthstudy.org/.Nurse’s Health Study. Brigham and Women’s Hospital, Harvard Medical School, Harvard T.H. Chan School of Public Health. 2016. Available at: https://nurseshealthstudy.org/.Search in Google Scholar
White GC. Hemophilia: An amazing 35-year journey from the depths of HIV to the threshold to cure. Trans Am Clin Climatol Assoc 2010; 121: 61-75. Available at: https://www.ncbi.nlm. nih.gov/pmc/articles/PMC2917149/.WhiteGC.Hemophilia: An amazing 35-year journey from the depths of HIV to the threshold to cure. Trans Am Clin Climatol Assoc2010; 121: 61-75. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917149/.Search in Google Scholar
Orman ES, Fried MW. Hepatitis C viral infection in patients with hemophilia and hemolytic disorders. Clin Liver Dis (Hoboken) 2021; 1(3): 95-7. doi: 10.1002/cld.42.OrmanESFriedMW.Hepatitis C viral infection in patients with hemophilia and hemolytic disorders. Clin Liver Dis (Hoboken)2021; 1(3): 95-7. doi: 10.1002/cld.42.Open DOISearch in Google Scholar
Online Certificate of Confidentiality User Guide. Department of Health and Human Resources. June 2023. Available at: https://www.era.nih.gov/files/Cert_Confidentiality_Ext_ userguide.pdf.Online Certificate of Confidentiality User Guide. Department of Health and Human Resources. June2023. Available at: https://www.era.nih.gov/files/Cert_Confidentiality_Ext_userguide.pdf.Search in Google Scholar
Santaella M, Carlson S, Kurta D, et al. Glanzmann Thrombasthenia beyond bleeding: Insights from lived experience experts. Haemophilia 2024; 30(S2), Supplement: Abstracts of the 2024 International World Congress of the World Federation of Hemophilia 21-24 April 2024 Madrid, Spain. Abstract FP003: p.17. doi: 10.1111/hae.14973.SantaellaMCarlsonSKurtaDGlanzmann Thrombasthenia beyond bleeding: Insights from lived experience experts. Haemophilia2024; 30(S2), Supplement: Abstracts of the 2024 International World Congress of the World Federation of Hemophilia 21-24 April 2024 Madrid, Spain. Abstract FP003: p.17. doi: 10.1111/hae.14973.Open DOISearch in Google Scholar
Pierce, CTJ, Branscum A, Irvin VL, et al. Pain attitudes and pain outcomes among people with bleeding disorders: Results from community voices research. Haemophilia 2024; 30(3): 720-7. doi: 10.1111/hae.14942.PierceCTJBranscumAIrvinVLPain attitudes and pain outcomes among people with bleeding disorders: Results from community voices research. Haemophilia2024; 30(3): 720-7. doi: 10.1111/hae.14942.Open DOISearch in Google Scholar
Limjoco J, Thornburg CD. Gene therapy for hemophilia A: A mixed methods study of patient preferences and decision-making. Patient Prefer Adherence 2023; 19(17): 1093-1105. doi: 10.2147/PPA.S406894.LimjocoJThornburgCD.Gene therapy for hemophilia A: A mixed methods study of patient preferences and decision-making. Patient Prefer Adherence2023; 19(17): 1093-1105. doi: 10.2147/PPA.S406894.Open DOISearch in Google Scholar
Limjoco J, Thornburg CD. Development of a haemophilia A gene therapy shared decision-making tool for clinicians. Haemophilia 2023; 29: 1184-1190. doi: 10.1111/hae.14822.LimjocoJThornburgCD.Development of a haemophilia A gene therapy shared decision-making tool for clinicians. Haemophilia2023; 29: 1184-1190. doi: 10.1111/hae.14822.Open DOISearch in Google Scholar
Limjoco J, Calatroni A, Aristizabal P, Thornburg CD. Gene therapy preferences and informed decision-making: Results from a National Hemophilia Foundation Community Voices research survey. Haemophilia 2022; 29(1): 51-60. doi: 10.1111/hae.14706.LimjocoJCalatroniAAristizabalPThornburgCD.Gene therapy preferences and informed decision-making: Results from a National Hemophilia Foundation Community Voices research survey. Haemophilia2022; 29(1): 51-60. doi: 10.1111/hae.14706.Open DOISearch in Google Scholar
Santaella ME, Nichols C, Carlson S, Witkop ML. Relationship between perceived social support, mental health, activity, and chronic pain in persons with inheritable bleeding disorders. Blood 2022; 140(suppl 1): 13156-8. doi: 10.1182/blood-2022-170856.SantaellaMENicholsCCarlsonSWitkopML.Relationship between perceived social support, mental health, activity, and chronic pain in persons with inheritable bleeding disorders. Blood2022; 140(suppl 1): 13156-8. doi: 10.1182/blood-2022-170856.Open DOISearch in Google Scholar
Vidal R. Community Voices in Research (CVR); A patient-centric approach moving the future of inherited bleeding disorders forward. Res Pract Thromb Haemost 2021; 5 (Suppl 1): e12554. Abstract HTRS.P2.3. doi: 10.1002/rth2.12554.VidalR.Community Voices in Research (CVR); A patient-centric approach moving the future of inherited bleeding disorders forward. Res Pract Thromb Haemost2021; 5 (Suppl 1): e12554. Abstract HTRS.P2.3. doi: 10.1002/rth2.12554.Open DOISearch in Google Scholar
Santaella ME, Witkop ML, Nichols C, et al. Bleeding disorder data registry reveals racial/ethnic disparities that could significantly impact patient journey. Blood 2021; 138(Suppl 1): 5004. doi: 10.1182/blood-2021-148025.SantaellaMEWitkopMLNicholsCBleeding disorder data registry reveals racial/ethnic disparities that could significantly impact patient journey. Blood2021; 138(Suppl 1): 5004. doi: 10.1182/blood-2021-148025.Open DOISearch in Google Scholar
Witkop ML, Santaella ME, Vidal R, Nichols C. The relationship between self-reported physical activity, treatment regimen, mental health, and pain in persons with hemophilia enrolled in NHF's community voices in research. Haemophilia 2021; 27 (S4), Special Issue: Abstracts of the WFH 17th International Musculoskeletal Congress, 3-7 May 2021, Virtual Meeting. Abstract FP-W-01.02. doi: 10.1111/hae.14385.WitkopMLSantaellaMEVidalRNicholsC.The relationship between self-reported physical activity, treatment regimen, mental health, and pain in persons with hemophilia enrolled in NHF's community voices in research. Haemophilia2021; 27 (S4), Special Issue: Abstracts of the WFH 17th International Musculoskeletal Congress, 3-7 May 2021, Virtual Meeting. Abstract FP-W-01.02. doi: 10.1111/hae.14385.Open DOISearch in Google Scholar
Witkop ML, Morgan G, O’Hara J, et al. Patient preferences, and priorities for haemophilia gene therapy in the US: A discrete choice experiment. Haemophilia 2021; 27(5): 769-82. doi:10.1111/hae.14383.WitkopMLMorganGO’HaraJPatient preferences, and priorities for haemophilia gene therapy in the US: A discrete choice experiment. Haemophilia2021; 27(5): 769-82. doi:10.1111/hae.14383.Open DOISearch in Google Scholar
O’Hara J, Martin AP, Nugent D, et al. Evidence of a disability paradox in patient-reported outcomes in haemophilia. Haemophilia 2021; 27(2): 245-252. doi: 10.1111/hae.14278.O’HaraJMartinAPNugentDEvidence of a disability paradox in patient-reported outcomes in haemophilia. Haemophilia2021; 27(2): 245-252. doi: 10.1111/hae.14278.Open DOISearch in Google Scholar
Witkop M, Morgan G, O’Hara J, et al. Patient preferences and priorities for haemophilia gene therapy in the US: a discrete choice experiment. Haemophilia 2021; 27(5): 769-782. doi: 10.1111/hae.14383.WitkopMMorganGO’HaraJPatient preferences and priorities for haemophilia gene therapy in the US: a discrete choice experiment. Haemophilia2021; 27(5): 769-782. doi: 10.1111/hae.14383.Open DOISearch in Google Scholar
Witkop ML, Santaella ME, Vidal R. Developing My Bleeding Disorders Community (MyBDC): A community-powered registry to provide a 360-view of living with a bleeding disorder. Haemophilia 2020; 26(S4), Special Issue: Abstracts of the World Federation of Hemophilia, Virtual Summit – Connecting the Global Bleeding Disorders Community. Abstract MTD-MP-034 (317); 112. doi: 10.1111/hae.13941.WitkopMLSantaellaMEVidalR.Developing My Bleeding Disorders Community (MyBDC): A community-powered registry to provide a 360-view of living with a bleeding disorder. Haemophilia2020; 26(S4), Special Issue: Abstracts of the World Federation of Hemophilia, Virtual Summit – Connecting the Global Bleeding Disorders Community. Abstract MTD-MP-034 (317); 112. doi: 10.1111/hae.13941.Open DOISearch in Google Scholar
Centers for Disease Control (CDC). Outbreak of lung injury associated with the use of E-cigarette, or vaping, products. February 2020. Available at: https://archive.cdc.gov/#/details?url=https://www.cdc.gov/tobacco/basic_information/e-cigarettes/severe-lung-disease.html.Centers for Disease Control (CDC). Outbreak of lung injury associated with the use of E-cigarette, or vaping, products. February2020. Available at: https://archive.cdc.gov/#/details?url=https://www.cdc.gov/tobacco/basic_information/e-cigarettes/severe-lung-disease.html.Search in Google Scholar
Simon TA, Khouri MS, Kou TD, Gomez-Caminero A. Realizing the potential of the patient perspective. Patient Pref Adherence 2020; 14: 2001-7. doi: 10.2147/PPA.S257355.SimonTAKhouriMSKouTDGomez-CamineroA.Realizing the potential of the patient perspective. Patient Pref Adherence2020; 14: 2001-7. doi: 10.2147/PPA.S257355.Open DOISearch in Google Scholar
Pedersen E, Truong KNL, Garcia GH, et al. Self-reported medication use among coronary heart disease patients showed high validity compared with dispensing data. J Clin Epidemiol 2021; 135: 115-24. doi: 10.1016/j.jclinepi.2021.02.015.PedersenETruongKNLGarciaGHSelf-reported medication use among coronary heart disease patients showed high validity compared with dispensing data. J Clin Epidemiol2021; 135: 115-24. doi: 10.1016/j.jclinepi.2021.02.015.Open DOISearch in Google Scholar
Daoust R, Paquet J, Williamson D, et al. Accuracy of a self-report prescription opioid use diary for patients discharge from the emergency department with acute pain: A multicentre prospective cohort study. BMJ Open 2022; 12(10): e062984. doi: 10.1136/bmjopen-2022-062984.DaoustRPaquetJWilliamsonDAccuracy of a self-report prescription opioid use diary for patients discharge from the emergency department with acute pain: A multicentre prospective cohort study. BMJ Open2022; 12(10): e062984. doi: 10.1136/bmjopen-2022-062984.Open DOISearch in Google Scholar
Rotenstein LS, Huckman RS, Wagle NW. Making patients and doctors happier – The potential of patient-reported outcomes. N Eng J Med 2017; 377(14): 1309-12. doi: 10.1056/NEJMp1707537.RotensteinLSHuckmanRSWagleNW.Making patients and doctors happier – The potential of patient-reported outcomes. N Eng J Med2017; 377(14): 1309-12. doi: 10.1056/NEJMp1707537.Open DOISearch in Google Scholar
Bullinger M, Globe D, Wasserman J, et al. Challenges of patient-reported outcome assessment in hemophilia care—A state of the art review. Value Health 2009; 12(5): 808-20. doi: 10.1111/j.1524-4733.2009.00523.x.BullingerMGlobeDWassermanJChallenges of patient-reported outcome assessment in hemophilia care—A state of the art review. Value Health2009; 12(5): 808-20. doi: 10.1111/j.1524-4733.2009.00523.x.Open DOISearch in Google Scholar
Community Voices in Research (CVR). National Bleeding Disorders Foundation. 2023. Available at: https://nhf-CVR.ihp. iqvia.com/.Community Voices in Research (CVR). National Bleeding Disorders Foundation. 2023. Available at: https://nhf-CVR.ihp.iqvia.com/.Search in Google Scholar
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