{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,2,21]],"date-time":"2025-02-21T07:46:21Z","timestamp":1740123981999,"version":"3.37.3"},"reference-count":42,"publisher":"Springer Science and Business Media LLC","issue":"3","license":[{"start":{"date-parts":[[2017,12,6]],"date-time":"2017-12-06T00:00:00Z","timestamp":1512518400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/www.springer.com\/tdm"},{"start":{"date-parts":[[2017,12,6]],"date-time":"2017-12-06T00:00:00Z","timestamp":1512518400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/www.springer.com\/tdm"}],"funder":[{"DOI":"10.13039\/100000065","name":"National Institute of Neurological Disorders and Stroke","doi-asserted-by":"publisher","award":["R01-NS077946"],"award-info":[{"award-number":["R01-NS077946"]}],"id":[{"id":"10.13039\/100000065","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["UL1-TR000433"],"award-info":[{"award-number":["UL1-TR000433"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2018,3]]},"DOI":"10.1007\/s11136-017-1747-6","type":"journal-article","created":{"date-parts":[[2017,12,6]],"date-time":"2017-12-06T08:14:04Z","timestamp":1512548044000},"page":"801-810","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Understanding the need for assistance with survey completion in people with Huntington disease"],"prefix":"10.1007","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8313-0254","authenticated-orcid":false,"given":"Elizabeth A.","family":"Hahn","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nancy R.","family":"Downing","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Julie C.","family":"Stout","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jane S.","family":"Paulsen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Becky","family":"Ready","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Siera","family":"Goodnight","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jin-Shei","family":"Lai","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer A.","family":"Miner","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Noelle E.","family":"Carlozzi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2017,12,6]]},"reference":[{"issue":"2","key":"1747_CR1","doi-asserted-by":"publisher","first-page":"61","DOI":"10.1177\/089198879801100204","volume":"11","author":"MA Nance","year":"1998","unstructured":"Nance, M. A. (1998). Huntington disease: Clinical, genetic, and social aspects. Journal of Geriatric Psychiatry and Neurology, 11(2), 61\u201370.","journal-title":"Journal of Geriatric Psychiatry and Neurology"},{"key":"1747_CR2","doi-asserted-by":"crossref","unstructured":"MacDonald, M. E., Ambrose, C. M., Duyao, M. P., Myers, R. H., Lin, C., Srinidhi, L., Barnes, G., Taylor, S. A., James, M., & Groot, N., & Huntington\u2019s Disease Collaborative Research Group. (1993). A novel gene containing a trinucleotide repeat that is expanded and unstable on Huntington\u2019s disease chromosomes. Cell, 72(6), 971\u2013983.","DOI":"10.1016\/0092-8674(93)90585-E"},{"issue":"9","key":"1747_CR3","doi-asserted-by":"publisher","first-page":"1083","DOI":"10.1002\/mds.25075","volume":"27","author":"T Pringsheim","year":"2012","unstructured":"Pringsheim, T., Wiltshire, K., Day, L., Dykeman, J., Steeves, T., & Jette, N. (2012). The incidence and prevalence of Huntington\u2019s disease: A systematic review and meta-analysis. Movement Disorders, 27(9), 1083\u20131091.","journal-title":"Movement Disorders"},{"key":"1747_CR4","doi-asserted-by":"publisher","first-page":"204","DOI":"10.1038\/nrneurol.2014.24","volume":"10","author":"CA Ross","year":"2014","unstructured":"Ross, C. A., Aylward, E. H., Wild, E. J., Langbehn, D. R., Long, J. D., Warner, J. H., Scahill, R. I., Leavitt, B. R., Stout, J. C., & Paulsen, J. S. (2014). Huntington disease: Natural history, biomarkers and prospects for therapeutics. Nature Reviews Neurology, 10, 204\u2013216.","journal-title":"Nature Reviews Neurology"},{"issue":"1","key":"1747_CR5","doi-asserted-by":"publisher","first-page":"85","DOI":"10.2217\/fnl.09.78","volume":"5","author":"JS Paulsen","year":"2010","unstructured":"Paulsen, J. S. (2010). Early detection of Huntington\u2019s disease. Future Neurology, 5(1), 85\u2013104.","journal-title":"Future Neurology"},{"issue":"3","key":"1747_CR6","doi-asserted-by":"publisher","first-page":"1003","DOI":"10.1111\/j.1750-3639.1997.tb00898.x","volume":"7","author":"CA Ross","year":"1997","unstructured":"Ross, C. A., Becher, M. W., Colomer, V., Engelender, S., Wood, J. D., & Sham, A. H. (1997). Huntington\u2019s disease and dentatorubral-pallidoluysian atrophy: Proteins, pathogenesis and pathology. Brain Pathology, 7(3), 1003\u20131016.","journal-title":"Brain Pathology"},{"issue":"2","key":"1747_CR7","doi-asserted-by":"publisher","first-page":"212","DOI":"10.1177\/1359105312438109","volume":"18","author":"NE Carlozzi","year":"2013","unstructured":"Carlozzi, N. E., & Tulsky, D. S. (2013). Identification of health-related quality of life (HRQOL) issues relevant to individuals with Huntington disease. Journal of Health Psychology, 18(2), 212\u2013225.","journal-title":"Journal of Health Psychology"},{"issue":"10","key":"1747_CR8","doi-asserted-by":"publisher","first-page":"2441","DOI":"10.1007\/s11136-016-1386-3","volume":"25","author":"NE Carlozzi","year":"2016","unstructured":"Carlozzi, N. E., Schilling, S. G., Lai, J. S., Paulsen, J. S., Hahn, E. A., Perlmutter, J. S., Ross, C. A., Downing, N. R., Kratz, A. L., McCormack, M. K., Nance, M. A., Quaid, K. A., Stout, J. C., Gershon, R. C., Ready, R. E., Miner, J. A., Barton, S. K., Perlman, S. L., Rao, S. M., Frank, S., Shoulson, I., Marin, H., Geschwind, M. D., Dayalu, P., Goodnight, S. M., & Cella, D. (2016). HDQLIFE: Development and assessment of health-related quality of life in Huntington disease (HD). Quality of Life Research, 25(10), 2441\u20132455.","journal-title":"Quality of Life Research"},{"issue":"5 Suppl 1","key":"1747_CR9","doi-asserted-by":"publisher","first-page":"S12","DOI":"10.1097\/01.mlr.0000254567.79743.e2","volume":"45","author":"DA DeWalt","year":"2007","unstructured":"DeWalt, D. A., Rothrock, N., Yount, S., & Stone, A. A., & PROMIS Cooperative Group. (2007). Evaluation of item candidates: The PROMIS qualitative item review. Medical Care, 45(5 Suppl 1), S12\u2013S21.","journal-title":"Medical Care"},{"issue":"11","key":"1747_CR10","doi-asserted-by":"publisher","first-page":"1179","DOI":"10.1016\/j.jclinepi.2010.04.011","volume":"63","author":"D Cella","year":"2010","unstructured":"Cella, D., Riley, W., Stone, A., Rothrock, N., Reeve, B., Yount, S., Amtmann, D., Bode, R., Buysse, D., Choi, S., Cook, K., Devellis, R., Dewalt, D., Fries, J. F., Gershon, R., Hahn, E. A., Pilkonis, P., Revicki, D., Rose, M., Weinfurt, K., Hays, R., & Lai, J. S., & PROMIS Cooperative Group. (2010). The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005\u20132008. Journal of Clinical Epidemiology, 63(11), 1179\u20131194.","journal-title":"Journal of Clinical Epidemiology"},{"issue":"10 Suppl","key":"1747_CR11","doi-asserted-by":"publisher","first-page":"S28","DOI":"10.1016\/j.apmr.2011.01.025","volume":"92","author":"D Cella","year":"2011","unstructured":"Cella, D., Nowinski, C., Peterman, A., Victorson, D., Miller, D., Lai, J.-S., & Moy, C. (2011). The Neurology Quality-of-Life Measurement Initiative. Archives of Physical Medicine and Rehabilitation, 92(10 Suppl), S28\u2013S36.","journal-title":"Archives of Physical Medicine and Rehabilitation"},{"issue":"3","key":"1747_CR12","doi-asserted-by":"publisher","first-page":"475","DOI":"10.1007\/s11136-011-9958-8","volume":"21","author":"R Gershon","year":"2012","unstructured":"Gershon, R., Lai, J., Bode, R., Choi, S., Moy, C., Bleck, T., Miller, D., Peterman, A., & Cella, D. (2012). Neuro-QOL: Quality of life item banks for adults with neurological disorders: Item development and calibrations based upon clinical and general population testing. Quality of Life Research, 21(3), 475\u2013486.","journal-title":"Quality of Life Research"},{"key":"1747_CR13","doi-asserted-by":"publisher","DOI":"10.1007\/978-1-4757-2691-6","volume-title":"Handbook of modern item response theory","author":"WJ van der Linden","year":"1997","unstructured":"van der Linden, W. J., & Hambleton, R. K. (1997). Handbook of modern item response theory. New York: Springer."},{"issue":"Suppl 1","key":"1747_CR14","doi-asserted-by":"publisher","first-page":"133","DOI":"10.1007\/s11136-007-9204-6","volume":"16","author":"D Cella","year":"2007","unstructured":"Cella, D., Gershon, R., Lai, J.-S., & Choi, S. (2007). The future of outcomes measurement: Item banking, tailored short-forms, and computerized adaptive assessment. Quality of Life Research, 16(Suppl 1), 133\u2013141.","journal-title":"Quality of Life Research"},{"issue":"10","key":"1747_CR15","doi-asserted-by":"publisher","first-page":"2403","DOI":"10.1007\/s11136-016-1354-y","volume":"25","author":"NE Carlozzi","year":"2016","unstructured":"Carlozzi, N. E., Downing, N. R., McCormack, M. K., Schilling, S. G., Perlmutter, J. S., Hahn, E. A., Lai, J. S., Frank, S., Quaid, K. A., Paulsen, J. S., Cella, D., Goodnight, S. M., Miner, J. A., & Nance, M. A. (2016). New measures to capture end of life concerns in Huntington disease: Meaning and purpose and concern with death and dying from HDQLIFE (a patient-reported outcomes measurement system). Quality of Life Research, 25(10), 2403\u20132415.","journal-title":"Quality of Life Research"},{"issue":"10","key":"1747_CR16","doi-asserted-by":"publisher","first-page":"2417","DOI":"10.1007\/s11136-016-1273-y","volume":"25","author":"NE Carlozzi","year":"2016","unstructured":"Carlozzi, N. E., Schilling, S. G., Lai, J. S., Perlmutter, J. S., Nance, M. A., Waljee, J. F., Miner, J. A., Barton, S. K., Goodnight, S. M., & Dayalu, P. (2016). HDQLIFE: The development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties. Quality of Life Research, 25(10), 2417\u20132427.","journal-title":"Quality of Life Research"},{"issue":"10","key":"1747_CR17","doi-asserted-by":"publisher","first-page":"2429","DOI":"10.1007\/s11136-016-1307-5","volume":"25","author":"NE Carlozzi","year":"2016","unstructured":"Carlozzi, N. E., Downing, N. R., Schilling, S. G., Lai, J. S., Goodnight, S. M., Miner, J. A., & Frank, A., S (2016). The development of a new computer adaptive test to evaluate chorea in Huntington disease: HDQLIFE Chorea. Quality of Life Research, 25(10), 2429\u20132439.","journal-title":"Quality of Life Research"},{"key":"1747_CR18","doi-asserted-by":"publisher","first-page":"136","DOI":"10.1002\/mds.870110204","volume":"11","author":"HPH Kremer","year":"1996","unstructured":"Kremer, H. P. H. & Hungtington Study Group. (1996). Unified Huntington\u2019s disease rating scale: Reliability and consistency. Movement Disorders, 11, 136\u2013142.","journal-title":"Movement Disorders"},{"issue":"1","key":"1747_CR19","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1212\/WNL.29.1.1","volume":"29","author":"I Shoulson","year":"1979","unstructured":"Shoulson, I., & Fahn, S. (1979). Huntington disease clinical care and evaluation. Neurology, 29(1), 1\u20131.","journal-title":"Neurology"},{"issue":"2","key":"1747_CR20","doi-asserted-by":"publisher","first-page":"452","DOI":"10.1212\/WNL.54.2.452","volume":"54","author":"K Marder","year":"2000","unstructured":"Marder, K., Zhao, H., Myers, R., Cudkowicz, M., Kayson, E., Kieburtz, K., Orme, C., Paulsen, J., Penney, J., & Siemers, E. (2000). Rate of functional decline in Huntington\u2019s disease. Neurology, 54(2), 452\u2013452.","journal-title":"Neurology"},{"key":"1747_CR21","volume-title":"Symbol Digit Modalities Test: Manual","author":"A Smith","year":"1995","unstructured":"Smith, A. (1995). Symbol Digit Modalities Test: Manual. Los Angeles, CA: Western Psychological Services."},{"issue":"1","key":"1747_CR22","doi-asserted-by":"publisher","first-page":"15","DOI":"10.1037\/0096-3445.121.1.15","volume":"121","author":"JR Stroop","year":"1992","unstructured":"Stroop, J. R. (1992). Studies of interference in serial verbal reactions (Reprinted from Journal Experimental-Psychology, Vol\u00a018, Pg 643\u2013662, 1935). Journal of Experimental Psychology: General, 121(1), 15.","journal-title":"Journal of Experimental Psychology: General"},{"issue":"11","key":"1747_CR23","doi-asserted-by":"publisher","first-page":"815","DOI":"10.2471\/BLT.09.067231","volume":"88","author":"TB \u00dcst\u00fcn","year":"2010","unstructured":"\u00dcst\u00fcn, T. B., Chatterji, S., Kostanjsek, N., Rehm, J., Kennedy, C., Epping-Jordan, J., Saxena, S., Korff, M. v., & Pull, C. (2010). Developing the World Health Organization Disability Assessment Schedule 2.0. Bulletin of the World Health Organization, 88(11), 815\u2013823.","journal-title":"Bulletin of the World Health Organization"},{"key":"1747_CR24","unstructured":"IBM Corporation. (2013). IBM SPSS Statistics for Windows, Version 22.0. Armonk, NY: IBM Corporation."},{"key":"1747_CR25","unstructured":"US Food and Drug Administration. (2009). Guidance for industry. Patient-reported outcome measures: Use in medical product development to support labeling claims. Retrieved June 15, 2017, from \n                    http:\/\/www.fda.gov\/downloads\/Drugs\/GuidanceComplianceRegulatoryInformation\/Guidances\/UCM071975.pdf\n                    \n                  ."},{"key":"1747_CR26","doi-asserted-by":"publisher","DOI":"10.3768\/rtipress.2015.bk.0014.1509","volume-title":"Patient-reported outcomes in performance measurement, publication no. BK-0014\u20131509","author":"D Cella","year":"2015","unstructured":"Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. N. (2015). Patient-reported outcomes in performance measurement. Publication No. BK-0014\u20131509. Research Triangle Park, NC: RTI Press."},{"issue":"4","key":"1747_CR27","doi-asserted-by":"publisher","first-page":"574","DOI":"10.1002\/mds.22412","volume":"24","author":"AK Ho","year":"2009","unstructured":"Ho, A. K., Gilbert, A. S., Mason, S. L., Goodman, A. O., & Barker, R. A. (2009). Health-related quality of life in Huntington\u2019s disease: Which factors matter most? Movement Disorders, 24(4), 574\u2013578.","journal-title":"Movement Disorders"},{"issue":"2","key":"1747_CR28","doi-asserted-by":"crossref","first-page":"159","DOI":"10.3233\/JHD-130051","volume":"2","author":"J Read","year":"2013","unstructured":"Read, J., Jones, R., Owen, G., Leavitt, B. R., Coleman, A., Roos, R. A. C., Dumas, E. M., Durr, A., Justo, D., & Say, M. (2013). Quality of life in Huntington\u2019s disease: A comparative study investigating the impact for those with pre-manifest and early manifest disease, and their partners. Journal of Huntington\u2019s Disease, 2(2), 159\u2013175.","journal-title":"Journal of Huntington\u2019s Disease"},{"issue":"5","key":"1747_CR29","doi-asserted-by":"publisher","first-page":"721","DOI":"10.1002\/mds.21920","volume":"23","author":"RE Ready","year":"2008","unstructured":"Ready, R. E., Mathews, M., Leserman, A., & Paulsen, J. S. (2008). Patient and caregiver quality of life in Huntington\u2019s disease. Movement Disorders, 23(5), 721\u2013726.","journal-title":"Movement Disorders"},{"key":"1747_CR30","doi-asserted-by":"publisher","first-page":"559","DOI":"10.1007\/s11136-015-1110-8","volume":"25","author":"C Rutherford","year":"2016","unstructured":"Rutherford, C., Costa, D., Mercieca-Bebber, R., Rice, H., Gabb, L., & King, M. (2016). Mode of administration does not cause bias in patient-reported outcome results: A meta-analysis. Quality of Life Research, 25, 559\u2013574.","journal-title":"Quality of Life Research"},{"issue":"Suppl 2","key":"1747_CR31","first-page":"S35-S42","volume":"84","author":"EA Hahn","year":"2003","unstructured":"Hahn, E. A., & Cella, D. (2003). Health outcomes assessment in vulnerable populations: Measurement challenges and recommendations. Archives of Physical Medicine and Rehabilitation, 84(Suppl 2), S35-S42.","journal-title":"Archives of Physical Medicine and Rehabilitation"},{"issue":"5","key":"1747_CR32","first-page":"9","volume":"12","author":"EA Hahn","year":"2003","unstructured":"Hahn, E. A., Cella, D., Dobrez, D. G., Shiomoto, G., Taylor, S. G., Galvez, A. G., Diaz, P., Valenzuela, V., Chiang, H. L., Khan, S., Hudgens, S. A., & Du, H. (2003). Quality of life assessment for low literacy Latinos: A new multimedia program for self-administration. Journal of Oncology Management, 12(5), 9\u201312.","journal-title":"Journal of Oncology Management"},{"issue":"2","key":"1747_CR33","doi-asserted-by":"publisher","first-page":"86","DOI":"10.1002\/pon.719","volume":"13","author":"E Hahn","year":"2004","unstructured":"Hahn, E., Cella, D., Dobrez, D., Shiomoto, G., Marcus, E., Taylor, S. G., Vohra, M., Chang, C. H., Wright, B. D., Linacre, J. M., Weiss, B. D., Valenzuela, V., Chiang, H. L., & Webster, K. (2004). The Talking Touchscreen: A new approach to outcomes assessment in low literacy. Psycho-Oncology, 13(2), 86\u201395.","journal-title":"Psycho-Oncology"},{"issue":"Supplement 3","key":"1747_CR34","doi-asserted-by":"publisher","first-page":"150","DOI":"10.1080\/10810730.2011.605434","volume":"16","author":"E Hahn","year":"2011","unstructured":"Hahn, E., Choi, S., Griffith, J., Yost, K., & Baker, D. (2011). Health literacy assessment using Talking Touchscreen Technology (Health LiTT): A new item response theory-based measure of health literacy. Journal of Health Communication, 16(Supplement 3), 150\u2013162.","journal-title":"Journal of Health Communication"},{"issue":"Suppl. 2","key":"1747_CR35","doi-asserted-by":"publisher","first-page":"80","DOI":"10.1080\/10810730.2010.500713","volume":"15","author":"KJ Yost","year":"2010","unstructured":"Yost, K. J., Webster, K., Baker, D. B., Jacobs, E. A., Anderson, A., & Hahn, E. A. (2010). Acceptability of the talking touchscreen for health literacy assessment. Journal of Health Communication, 15(Suppl. 2), 80\u201392.","journal-title":"Journal of Health Communication"},{"issue":"Supp2","key":"1747_CR36","doi-asserted-by":"publisher","first-page":"4","DOI":"10.1080\/10810730.2015.1061071","volume":"20","author":"EA Hahn","year":"2015","unstructured":"Hahn, E. A., Burns, J. L., Jacobs, E. A., Ganschow, P. S., Garcia, S. F., Rutsohn, J. P., & Baker, D. W. (2015). Health literacy and patient-reported outcomes: A cross-sectional study of underserved English- and Spanish-speaking patients with type 2 diabetes. Journal of Health Communication, 20(Supp2), 4\u201315.","journal-title":"Journal of Health Communication"},{"issue":"8","key":"1747_CR37","doi-asserted-by":"publisher","first-page":"958","DOI":"10.1038\/ejhg.2013.275","volume":"22","author":"NR Downing","year":"2014","unstructured":"Downing, N. R., Kim, J.-I., Williams, J. K., Long, J. D., Mills, J. A., & Paulsen, J. S. (2014). WHODAS 2.0 in prodromal Huntington disease: Measures of functioning in neuropsychiatric disease. European Journal of Human Genetics, 22(8), 958\u2013963.","journal-title":"European Journal of Human Genetics"},{"issue":"2","key":"1747_CR38","doi-asserted-by":"publisher","first-page":"196","DOI":"10.1176\/jnp.2010.22.2.196","volume":"22","author":"K Duff","year":"2010","unstructured":"Duff, K., Paulsen, J. S., Beglinger, L. J., Langbehn, D. R., Wang, C., Stout, J. C., Ross, C. A., Aylward, E., Carlozzi, N. E., & Queller, S. (2010). \u201cFrontal\u201d behaviors before the diagnosis of Huntington\u2019s disease and their relationship to markers of disease progression: Evidence of early lack of awareness. Journal of Neuropsychiatry and Clinical Neurosciences, 22(2), 196\u2013207.","journal-title":"Journal of Neuropsychiatry and Clinical Neurosciences"},{"issue":"3","key":"1747_CR39","doi-asserted-by":"publisher","first-page":"193","DOI":"10.1023\/A:1015291021312","volume":"11","author":"KN Lohr","year":"2002","unstructured":"Scientific Advisory Committee of the Medical Outcomes Trust, Lohr, K. N., Aaronson, N., Alonso, J., Burnam, A., Patrick, D. L., Perrin, E. B., & Stein, R. (2002). Assessing health status and quality-of-life instruments: Attributes and review criteria. Quality of Life Research, 11(3), 193\u2013205.","journal-title":"Quality of Life Research"},{"key":"1747_CR40","volume-title":"Survey methodology","author":"RM Groves","year":"2009","unstructured":"Groves, R. M. (2009). Survey methodology (2nd ed.). Hoboken, NJ: Wiley.","edition":"2"},{"issue":"3","key":"1747_CR41","doi-asserted-by":"publisher","first-page":"281","DOI":"10.1111\/j.1399-0004.2010.01538.x","volume":"80","author":"PJ Morrison","year":"2011","unstructured":"Morrison, P. J., Harding-Lester, S., & Bradley, A. (2011). Uptake of Huntington disease predictive testing in a complete population. Clinical Genetics, 80(3), 281\u2013286.","journal-title":"Clinical Genetics"},{"issue":"2","key":"1747_CR42","doi-asserted-by":"crossref","first-page":"189","DOI":"10.3233\/JHD-140102","volume":"3","author":"MT Bull","year":"2014","unstructured":"Bull, M. T., Darwin, K., Venkataraman, V., Wagner, J., Beck, C. A., Dorsey, E., & Biglan, K. M. (2014). A pilot study of virtual visits in Huntington disease. Journal of Huntington\u2019s Disease, 3(2), 189\u2013195.","journal-title":"Journal of Huntington\u2019s Disease"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/article\/10.1007\/s11136-017-1747-6\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-017-1747-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-017-1747-6.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2020,5,16]],"date-time":"2020-05-16T21:20:43Z","timestamp":1589664043000},"score":1,"resource":{"primary":{"URL":"http:\/\/link.springer.com\/10.1007\/s11136-017-1747-6"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,12,6]]},"references-count":42,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2018,3]]}},"alternative-id":["1747"],"URL":"https:\/\/doi.org\/10.1007\/s11136-017-1747-6","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"type":"print","value":"0962-9343"},{"type":"electronic","value":"1573-2649"}],"subject":[],"published":{"date-parts":[[2017,12,6]]},"assertion":[{"value":"26 November 2017","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"6 December 2017","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Compliance with Ethical Standards"}},{"value":"Authors Hahn, Paulsen, Goodnight, Lai and Miner have received research grants from the National Institutes of Health. Author Stout has received consultancy payments from the University of Michigan. Author Carlozzi has received research grants from the National Institutes of Health and consultancy payments from Teva Pharmaceuticals.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and\/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Informed consent was obtained from all individual participants included in the study.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Informed consent"}}]}}