ALS Focus Wave 6 – Insurance and Payment for ALS Care Surveydoi:10.7910/DVN/ERQEZKHarvard Dataverse2025-08-011The ALS Association, 2025, "ALS Focus Wave 6 – Insurance and Payment for ALS Care Survey", https://doi.org/10.7910/DVN/ERQEZK, Harvard Dataverse, V1, UNF:6:JuOada8YJ8PUPWJI76Kfsw== [fileUNF]ALS Focus Wave 6 – Insurance and Payment for ALS Care Surveydoi:10.7910/DVN/ERQEZKThe ALS AssociationHarvard DataverseSherman, AlexanderKatsovskiy, Igor2025-08-01Medicine, Health and Life SciencesALSSurveyALS FocusInsuranceAccessClaimDenialPrior AuthorizationAppealCostCareTreatmentDemographicsDisease historyHealth statusThe NeuroVERSE record contains the following files: <OL> <LI>ALSFocus_Demographics_Survey_Public – ALS Focus Demographics Survey written questions.</LI> <LI>ALSFocus_InsuranceAndPayment_Survey_Public – ALS Focus Insurance and Payment for ALS Care Survey written questions.</LI> <LI>ALSFocus_HealthStatus_Survey_Public – ALS Focus Health Status Survey written questions.</LI> <LI>ALSFocus_Demographics_Methodologies_Public – ALS Focus Demographics Survey data cleaning approaches and guidance for data analysts.</LI> <LI>ALSFocus_InsuranceAndPayments_Methodologies_Public – ALS Focus Insurance and Payment for ALS Care Survey data cleaning approaches and guidance for data analysts.</LI> <LI>ALSFocus_Demograhics_Dictionary – ALS Focus Demographics Survey data dictionary.</LI> <LI>ALSFocus_InsuranceAndPayments_Dictionary – ALS Focus Insurance and Payment for ALS Care (and Health Status Survey) data dictionary.</LI> <LI>ALSFocus_Demographics_Public_Stata – ALS Focus Demographics Survey data in Stata (.dta) format. </LI> <LI>ALSFocus_InsuranceAndPayments_Public_Stata – ALS Focus Insurance and Payment for ALS Care Survey data in Stata (.dta) format.</LI> </OL>The Amyotrophic Lateral Sclerosis Association (“The Association”) grants a non-exclusive, non-assignable, non-transferable, royalty free license to use Data for educational and research analyses purposes (“Secondary Analyses”). Data shall not be used for any purpose other than Secondary Analyses. Data Requestor shall not disclose, release, sell, rent, lease, loan, or otherwise grant access to Data to any third party without the prior written consent of The Association. You acknowledge the importance of data privacy of individuals to whom accessed Data may relate, and, accordingly, commit to comply with all applicable data privacy protection laws, not to attempt to identify subjects, and not to combine accessed Data with other sources of data that would lead to the deliberate identification of any individual.Sarah Parvanta ALSFocus@als.org 202-464-8847The Association must be acknowledged as the source of Data in all written, visual, or oral public disclosures concerning Your research using Data, and a link to the Direct Object Identifier (DOI) must be included in all written disclosures concerning Your research using Data. 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The Association will not be liable to You for any loss, claim, or demand You make, or made against You by any other party, due to or arising from the use of Data by You, except to the extent permitted by law when caused by the gross negligence or willful misconduct of The Association.DATA SHARING TERMS These Data Sharing Terms ("Terms") are effective as of the date of Your acceptance ("Effective Date") and are between you ("You" or "Your") and The Amyotrophic Lateral Sclerosis Association ("The Association"), which specifically states the license terms, liability, limitations and warranty relating to Your use of the ALS Focus Data and corresponding Data Dictionary ("Data"). I. Limited Rights of Use and Restrictions a. By accepting these Terms, The Association grants You a non-exclusive, non-assignable, non-transferable, royalty free license to use Data for educational and research analyses purposes ("Secondary Analyses"). 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(meaning the cause is unknown)19562Familial (meaning at least one family member was diagnosed with ALS)2474Prefer not to answer183Do not know213UNF:6:6zFqMNuii1JrJp+tAHpCEQ==.2.01168.08.01.02434.02.7900575184880871.8772131086974248Yes, only clinical testing (ordered by you or your doctor)863Yes, only research testing (as part of a clinical trial or research study)2147Prefer not to answer84Yes, both clinical and research testing2705Yes, Do not remember what type of testing2931No7866Do not know1302Yes, only clinical testing (billed to insurance or paid for out-of-pocket)647UNF:6:Q2fs5GR98/Ncfqtr/hNYgA==2765.0837.01.6487455197132611.03.00.62324507954853062.0.1No3612Yes4093Prefer not to answer67UNF:6:GyB/vAe5G7SjNa8ouB5oIA==0.95296563904716051.02.02433.06.01169.02.346074804767777.5Do not know232Upper limb (hand or arm)7716Prefer not to answer114Multiple site onset1633Lower limb (foot or leg)9341Bulbar (tongue, face, speech, or swallow)531UNF:6:khdAbFw41yQrpBAAs2YOgA==3602.00.01.00.67379233759023680.46888939095118340.0.1.01True24270False1175UNF:6:7SZn75AIpI5tB6U8K81hfA==1387.02024.0.2018.10835214446966.30044217362996851943.02020.02215.0UNF:6:46QZ1rerGYQHXLDXZWb8zw==2427.01175.00.0.0.104907663973386011.00.00.0111248454882570770False24001True27UNF:6:tUArYVwzZ5tZMCc/wgihJQ==2427.0.0.25527598098775371.00.00.00.070045323444581861175.01True1700False2257UNF:6:ucQBcfx6TiZkGxSutDgmGA==0.01.03602.00.4690948747686569.1.00.6732370905052790.00False11771True2425UNF:6:dVSEZpWsRZVKCHOpw/SM7w==2019.77537796976252021.01951.05.225643031493872.2315.02024.01287.0UNF:6:5bknb7g0f81U0GKMRbetsg==0.0.0.094834431827468510.01.00.0090721649484535871177.02425.01True220False2403UNF:6:uhi/2jouMHMTJQ3SB/KGrw==0.00.16862044239841790.029278350515463931177.02425.00.01.0.0False23541True71UNF:6:RI30egb9+zuk7kqb260Jnw==.21.51150775011743702.01473.040.213375716226772129.00.012.0UNF:6:jGLTqNc+aAgMycNDooz1Ug==2.0876449637106984.353217472992016.9.02129.05.01.01473.051-2 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work due to disability839Other, please specify84Homemaker525Student116Retired68812Unable to work8UNF:6:XB9zzb8ZIA3uHsP3/GJqBQ==UNF:6:Ph1apC2NCSjYpmsFXcrsoQ==UNF:6:ETJclolIIlDruNI2t7Dqqg==2.55606841253631813.0.1180.02422.05.8067712634186561.06.06Retired10285Student28Unable to work due to other reason, please specify137Unable to work due to disability72811Self-Employed1010Prefer not to answer103Unemployed771Employed full time30312Unable to work1259Other, please specify82Employed part 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to answer31Primary Care Physician305Do not know133ALS Clinic or Neurologist specializing in ALS14804Other, please specify32UNF:6:PcqzNLl46SXIu5jGVGPy9A==UNF:6:7IlV3p/pg7BQ6ODNLL2b4Q==1.00.3642490222488622.1.13979381443298933.01.01177.02425.03Prefer not to answer151Yes21012No309UNF:6:sPgQM2RNOsKYYJb4LLae9A==2.837696335078535.1.02.08.01501.02101.01.8394686668478917221 to 40 miles5097Do not know8581 to 100 miles157341 to 60 miles249461 to 80 miles1756Over 100 miles3258Prefer not to answer41Under 20 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not to answer11Yes1002No1372UNF:6:TqadBrqsa9SATjS9svp1og==599.01.02.79838847401331673003.03.0.3.75459098497495812.012Unable to work1413Deceased011Self-Employed510Prefer not to answer58Unable to work due to other reason, please specify05Student42Employed part time543Unemployed257Unable to work due to disability11Employed full time2286Retired2234Homemaker329Other, please specify8UNF:6:eJi/QH4iR10IprkWB7QZHg==UNF:6:w/wdsZCJ0hvGObMOHJRdvw==UNF:6:5vDL/tsvM4eiqf0UvabFmQ==2.0661.05.01.62007304913881073.1543116490166451.02941.0.5I share a home with the person I care for2732I live with the person I care for2441I do not live with the person I care for1023Other, please specify384Prefer not to answer4UNF:6:mkvERWGPKJm6CqrltYeiUQ==UNF:6:0y0SF7TMI/v0rbwmxQh84Q==5.4666666666666676.03527.075.0.1.98870685495750071.08.04Between $50,000 and $74,999148Prefer not to answer146Between $100,000 and $150,000147More than $150,000131Less than $20,00023Between $35,000 and $49,99922Between $20,000 and $34,99975Between $75,000 and $99,9999UNF:6:K9mldDhUt7fd4ZJT4ylXww==5.08576998050682151.05.0.1026.02.1717593725837278.02576.03Between $35,000 and $49,9991087More than $150,0001228Prefer not to answer2015Between $75,000 and $99,9991422Between $20,000 and $34,999956Between $100,000 and $150,0001404Between $50,000 and $74,9991581Less than $20,00060UNF:6:IYnNXtEK+NM78TPpTOcFLA==2.01.0768.08.02834.0.1.34752575487042672.621093757Other06More than 20 years ago4921 to 5 years ago35436 to 10 years ago1318Prefer not to answer1516 to 20 years ago321Less than 1 year ago118411 to 15 years ago83UNF:6:YqdL0PpSF5BF0hJXSTiCEQ==.1.01.03597.01.05.00.01.01True50False0UNF:6:UaoihOlnJBuDnXA0rtedtw==0.0NaNNaN.3602.0NaNNaNNaN0False01True0UNF:6:XOsRL4JZo8EB1Xl/zRRrDg==3237.0365.02.0.2.01.94794520547945221.00.222442478699486381Yes192No3463Prefer not to answer0UNF:6:eP/bzxZ9OePLmSGHGnmo9A==365.03237.01.02.6487736419733476.3.621917808219177612.03.06Retired1427Unable to work due to disability012Unable to work413Deceased011Self-Employed48Unable to work due to other reason, please specify05Student810Prefer not to answer34Homemaker132Employed part time373Unemployed109Other, please specify11Employed full time143UNF:6:+lw053g3v18VC5p68eWjOg==UNF:6:/W21m9EnG8PyAjercrgUNQ==UNF:6:jUF7Duyla8eaEleoCBHVcQ==UNF:6:enKYG7ZqMP6lzolrn3Ob/g==UNF:6:U5wJ8h+h1H6xsnbsQ6goDQ==UNF:6:E7gUZHXpzKDoReyFEoortg==194.00.01.01.0.0.01.01.00False01True194UNF:6:Jglz4Rgwp8pfaktQQoOEeA==0.00.0194.00.78865979381443310.40931543726492511.01.0.1True1530False41UNF:6:/WkC9KHUMun1X//ue3AGDw==0.0.0.108247422680412351.00.00.00.3114965058870668194.01True210False173UNF:6:80PvuA9Aq5JXHHTIjFIx7g==0.0.0.056701030927835060.0194.00.231868828602915330.01.00False1831True11UNF:6:qxzW46bYH4lBeaVqhtxAXw==194.00.077319587628866010.00.26778893345055430.01.0.0.00False1791True15UNF:6:ucV6o8ZP5xYldPurHBE8hg==1.00.00.44934651552014460.2783505154639176.0.0194.00.00False1401True54UNF:6:6/yakbvQMkj1CYFZTNhAvw==0.14948453608247425194.00.35748798634554050.01.00.0.0.00False1651True29UNF:6:+VBlZrxrzntI5xcjUHjPzg==0.00.00.0194.00.00.00.0.1True00False194UNF:6:JALO9RPuonYtzmoBLqwJmg==1.00.00.005154639175257742.194.00.00.071795815861773580.01True10False193UNF:6:Wi4Yqk+J5cC4dStaJ/xH0A==0.041237113402061861.00.0194.00.00.199352619250380530.0.0False1861True8UNF:6:kBlBCntSryxDkAwSwNvt8w==1.00.00.101271231850475680.010309278350515464.194.00.00.01True20False192UNF:6:3xzjMYnn61Od2A+tJ5ZMMQ==0.0.0.00.00.00.00.0194.00False1941True0UNF:6:JALO9RPuonYtzmoBLqwJmg==UNF:6:QChAbyNh7EnEYIwJUeaX8A==0.78350515463917540.0.1.0194.01.00.412920951767435760.00False421True152UNF:6:BZHD3y335Ripn9jVOd3IBw==0.0.42.01.00.70394736842105250.45802362340350705152.01.01True1070False45UNF:6:qFAJkVRQYX8B8v2eRrRvRQ==0.49178507690682152.042.00.00.40131578947368421.0.0.00False911True61UNF:6:LrZOlZWrUex2HUl9cFDXUw==0.43818878459469990.25657894736842096.152.042.00.00.01.01True390False113UNF:6:i13nfzg1zjNwUu1M7Sehnw==42.00.0152.00.0.1.00.282894736842105250.451894659791720331True430False109UNF:6:SB7cDFP8d3sFyYpejZJQ3g==0.05263157894736844.42.00.224035051781254660.0152.00.01.00False1441True8UNF:6:dU4ihdj43uE9dd+DmecSVQ==152.00.00.0065789473684210640.00.0811107105653812642.0.1.00False1511True1UNF:6:TYXEXE1HQbtX49rq/0PvIA==.164.030.00.67633519664391441.62195121951219523.01.02.02No661Yes803Do 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appealed264Prefer not to answer03Do not know22No, never appealed11UNF:6:l0XDJhIJ7rf10nSijEimdw==183.0.11.01.03.00.92441627773717541.01.63636363636363623Do not know32No, never appealed11Yes, appealed74Prefer not to answer0UNF:6:4bgZFiLn96rLO6TAMqbtlQ==UNF:6:Z5LrIMZ6Lf+UFsyW6Hy7VA==UNF:6:6Kw6qMRb7brj/fDxVkA0fQ==163.02022.01.59029313589178231.0.2020.93548387096782022.02016.0UNF:6:rUrJq1cynjQZxfrCKpPDjA==6.030.0.3.0164.03.16666666666666651.01.703613468652649621-3 months947-12 months26This appeal process is still ongoing65More than a year134-6 months81Less than a month4UNF:6:Gv46GojRzIACPlb5ldob5Q==2.15384615384615371.02.01.189699380257305168.05.026.0.3Appealed three times24Appealed four times or more21Appealed once82Appealed twice125Do not know or remember2UNF:6:zEGu3yKvM8pVYMiwXnZKfA==25.0169.04.01.00.93630479367920931.72.1.01Yes, prior authorization fully granted142Yes, prior authorization partially granted53No, prior authorization not granted54Do not know or remember1UNF:6:ePwj+rEloCN4vo64FlELCw==1.45454545454545461.01.011.02.0183.00.5222329678670935.1Yes62No53Do not know or remember0UNF:6:EhNczw7XVfKm84hHJyh+wA==0.0.3.03.01.03.03.0193.02Yes, prior authorization partially granted01Yes, prior authorization fully granted04Do not know or remember03No, prior authorization not granted1UNF:6:7cu6QgdPfstT1rTpT0t7sA==2.02.00.0193.02.0.2.01.02No13Do not know or remember01Yes0UNF:6:NHzXtWX43fn+7rSF1WE7Lg==.1.01.01.5188.03.00.83666002653407566.02Yes, paid the full cost out of pocket14Do not know or remember03No, did not pay any of the cost out of pocket11Yes, paid some of the cost out of pocket4UNF:6:6v05JNowMS/SFnZv7eQjjg==0.77272339764974261.73913043478260862.0148.0.1.046.03.04Prefer not to answer01Yes, appealed213Do not know92No, never appealed16UNF:6:Pq5hieBxrVa9x3Rf1GRYMQ==9.01.0185.01.01.4444444444444444.3.00.72648315725677892No, never appealed23Do not know11Yes, appealed64Prefer not to answer0UNF:6:jqDIeJhieeXeHa8C+YVavg==UNF:6:aYHvHVHEWex/lkpZM29sTg==UNF:6:fM4Dit0eRsaef3fb1VzN3A==1.93390796058137122022.02016.02022.0169.0.25.02020.64UNF:6:4tDnHBlIkHuoT36kl3BeUA==1.73152776639507063.03.2916666666666676.0.1.024.0170.034-6 months547-12 months16This appeal process is still ongoing55More than a year21Less than a month221-3 months9UNF:6:IMnDbQ12HwVHq+ZHuLQAew==21.01.0173.01.05.02.142857142857143.1.52596573636875242Appealed twice44Appealed four times or more23Appealed three times15Do not know or remember31Appealed once11UNF:6:rX4dfdFry3uVO6SIs2+kaQ==1.0910894511799621.021.04.0.2.0952380952380953173.02.03No, the claim was not paid71Yes, the claim was fully paid by the health insurance plan94Do not know or remember22Yes, the claim was partially paid by the health insurance plan3UNF:6:uHUIOP5l1Lm+I5y0NbZ+rw==3.0.182.012.01.66666666666666672.00.65133894727892971.02No61Yes53Do not know or remember1UNF:6:aI5336bFV/lJy4qFtsa9sQ==2.06.01.03279555898864441.02.3333333333333335188.0.4.02Yes, paid the full cost out of pocket34Do not know or remember11Yes, paid some of the cost out of pocket13No, did not pay any of the cost out of pocket1UNF:6:lwBCIQ9KVqi8+ajKFheX3Q==UNF:6:zcOdeBhUMtbbybmz2/HE5g==0.221681469686704160.01.0194.00.94845360824742251.00.0.0False101True184UNF:6:WUxqfgoAB5X1pcbQ3RWkLQ==0.010.00.0184.00.498393713500130841.0.0.445652173913043460False1021True82UNF:6:zaxV02ebNoHarmdQRa+k8w==184.010.00.17934782608695651.0.0.00.384690079922625770.01True330False151UNF:6:TJXO1Atw5t0eh5eFbBHm8Q==UNF:6:6Lcwf4Q6Dpu8ZHnCZrtM6A==47.011.53546368470476228.18840579710145125.069.0.30.00.0UNF:6:tiq7t2ZaQ8hHIzOCWplJvw==UNF:6:lE8RDeHv4jZxxPs+aXzy+g==2020.069.00.267602789964774052022.02022.0125.02021.9565217391305.UNF:6:nf3exGYRSWbz/0FR6GeQlQ==0.0.0.94329896907216480.01.01.00.23186882860291538194.01True1830False11UNF:6:cwjODgPUpUle6B7Gd3j8Xw==11.0.0.486338797814207750.0183.00.50118456929303780.01.00False941True89UNF:6:CDvpIBo1zlbHzoKpxQoeNg==0.1273314372094320.00.0.0.0163934426229508071.011.0183.01True30False180UNF:6:uOez5ipaKe9qMw87NHPUhw==0.42076502732240451.0.0.0183.00.495036311778219611.00.00False1061True77UNF:6:chqLAPcj2Zb5YmqQHKtMBQ==1.00.227909176924053440.00.05464480874316938183.0.11.00.00False1731True10UNF:6:KxoTIZBLeQ7VwGDCSJQW6w==UNF:6:i9ETLJmtw96CYsxaRG4E+w==122.0109.0.66.618470588235385.028.46439084966647671.00.0UNF:6:kX4rPgbac8S+KkhwYFzfCA==UNF:6:p/F30ttQLDrwTj3cn2CP4A==101.02021.51612903225893.02010.02022.0.2023.01.619265152883745UNF:6:7P3Qr654fgyLSPoleqIyxg==0.0.1.00.00.26778893345055461.0194.00.92268041237113391True1790False15UNF:6:WXVX1w9bfkFbo12Q//zbVg==0.167597765363128450.00.015.0179.00.374556419589429371.0.0False1491True30UNF:6:aatN1K2KxWUqRybuuhnzAA==179.015.00.00.00.016759776536312880.12873020018783146.1.00False1761True3UNF:6:x8AmyRrgjxxLOBB8SrKXHw==0.5921787709497207.1.01.0179.00.015.00.49280810974449420False731True106UNF:6:E+Z+bf/o8IbpUc1FhECn5w==0.0.0.015.00.212290502793296061.00.41007645829877853179.01True380False141UNF:6:mRKrg8rZsSF0uhADtq9fZw==UNF:6:36WOvW16HuJqtWtzSzBfeQ==28.0104.022.098523820075744166.0.78.4175.1007142857142930.0UNF:6:22u5r92xw2PvRPyfmzv3cg==UNF:6:HQpFGygMruTtc+4icMtdYA==161.033.02020.02023.02022.0.2021.8787878787880.4846116845975598UNF:6:2m/+4JNzEYuEfdT+0BbkfA==1.018.07.03.0.1.8670067717376622.0176.07Prefer not to answer14Can speak without a speech assisting device, but often needs to repeat what is said316Has lost the ability to speak completely and require a speech assisting device or other non-verbal ways to communicate263Can speak without a speech assisting device, but with difficulty and slurring111Can speak normally without a speech assisting device572Can speak without difficulty, but with a noticeable change in voice335Can speak with difficulty, but prefer to use a speech assisting device, hand gestures, or other non-verbal ways to 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Respironics Trilogy01Philips Respironics BiPAP� device08Do not know03Ventec life VOCSN02ResMed Bi-level device07Other, please specify1944ResMed Astral06LTV Ventilator09Prefer not to answer0UNF:6:YVCaR/+T3JPg84R9JLvNjw==UNF:6:n8t/nz0Ih359RorvMhtlDw==1.00.90206185567010291.0194.0.0.298000028321207030.00.01True1750False19UNF:6:c7gVlq5sX4g6vqMU3gJYaw==0.36765801200722371.00.00.019.00.15999999999999998.175.01True280False147UNF:6:kzXqTFwJxhMX7dAn4o2WgQ==0.00.36765801200722371.00.16.19.0175.00.01True280False147UNF:6:Q1bEWUiF3BY0nTIw+NhIaw==0.44743384352882321.019.00.0175.0.0.00.27428571428571431True480False127UNF:6:fSqi3xkzq1gm1llJbG4PhQ==0.15999999999999998.19.0175.00.00.01.00.367658012007223871True280False147UNF:6:jVWppI6dNjsh6184zSTubQ==0.554285714285714319.01.0.0.01.0175.00.4984705672393721True970False78UNF:6:/l2X6wnWM/Rm6H5Ce356QQ==.0.01.019.00.221504039260838360.00.051428571428571455175.00False1661True9UNF:6:FFVzU0FfEx1vrw45DU5eQw==175.0.0.00.00.019.00.00.00False1751True0UNF:6:yKaaWwv0c6F5x+BWlxU5Tw==UNF:6:uvnXOr5sfJ/Imgp3joEt3A==0.00.479381443298969030.0194.00.00.5008672570527486.1.00False1011True93UNF:6:Fwp0UalYIvNCCyUHNTjABg==0.39722035599928224101.00.80645161290322580.01.01.0.93.01True750False18UNF:6:V6CGPVru0YlC/qWUZrX0Vg==93.0.0.01.00.177642343612212180.00.03225806451612905101.00False901True3UNF:6:VN1HGpW5ouv649SMi11Y7w==.0.00.00.0101.00.00.093.00False931True0UNF:6:TPbE/eqr8YwF8Cg2wPvYfQ==1.00.0101.093.00.28191557395227340.00.08602150537634408.0False851True8UNF:6:bGEl2BU3fUM2X1PQQRus0w==0.4130865359806689.0.093.01.0101.00.215053763440860220.01True200False73UNF:6:oGwJ2Kaqk7lcvkhhMk+vOQ==93.00.00.00.145847942232276351.0.0.021505376344086027101.01True20False91UNF:6:S1/KngY/XBEUEZ68ghnywg==0.00.00.0101.0.0.00.093.01True00False93UNF:6:TPbE/eqr8YwF8Cg2wPvYfQ==UNF:6:sa8g2u+34uDyK6ZQ1TxemA==171.08.01.01.70760233918128671.023.0.1.37494409931087487Other, please specify18Do not know32Percutaneous Endoscopic Gastrostomy (PEG)293Radioscopically Inserted Percutaneous Gastrostomy (RIG)26Nasogastric (NG)01Does not currently have a feeding tube1164Mic-Key199Prefer not to answer05Gastrojejunal (GJ)1UNF:6:83FrLchcojI1CzPzsKsmSg==UNF:6:pIK8pCjL7QQZyd1rVuA+BQ==ALSFocus_Demographics_Dictionary.xlsxFocus Demographics Survey data dictionary.application/vnd.openxmlformats-officedocument.spreadsheetml.sheetALSFocus_Demographics_Methodologies_Public.pdfFocus Demographics Survey data cleaning approaches and guidance for data analysts.application/pdfALSFocus_Demographics_Survey_Public.pdfALS Focus Demographics Survey written questions.application/pdfALSFocus_HealthStatus_Survey_Public.pdfALS Focus Health Status Survey written questions.application/pdfALSFocus_InsuranceAndPayment_Methodologies_Public.pdfALS Focus Demographics Survey data cleaning approaches and guidance for data analysts.application/pdfALSFocus_InsuranceAndPayments_Dictionary.xlsxALS Focus Insurance and Payment for ALS Care (and Health Status Survey) data dictionary.application/vnd.openxmlformats-officedocument.spreadsheetml.sheetALSFocus_InsuranceAndPayment_Survey_Public.pdfALS Focus Insurance and Payment for ALS Care Survey written questions.application/pdf