Registry Consent Form Please indicate you consent to the following* I have read, or have had read to me, and I understand the Participant Information Sheet. I have been given sufficient time to consider whether or not to participate in this registry. I have had the opportunity to use a legal representative, whanau/ family support or a friend to help me ask questions and understand the registry. I am satisfied with the answers I have been given regarding the registry I understand that taking part in this registry is voluntary (my choice) and that I may withdraw from the registry at any time without this affecting my medical care. I consent to the research staff collecting and storing and sharing my information, in the manner described above, including information about my health from my medical records held by my GP and the hospital system. Where relevant I specifically give permission to collection regarding genetic tests that I have had I agree to an approved auditor appointed by the New Zealand Health and Disability Ethic Committees, or any relevant regulatory authority or their approved representative reviewing my relevant medical records for the sole purpose of checking the accuracy of the information recorded for the registry. I understand that my participation in this registry is confidential and that no material, which could identify me personally, will be used in any reports on this registry. I know who to contact if I have any questions about the registry in general. I understand my responsibilities as a registry participant. If I decide to withdraw from the registry, I agree that the information collected about me up to the point when I withdraw may continue to be processed.* Yes No I would like my GP to be informed of my participation in this registry.* Yes No Declaration by participantConsent* I hereby consent to take part in this registry. Signature*Use your mouse or fingerParticipant Name First Last Participant Email* Participant Phone*Today's Date* DD slash MM slash YYYY Are a representative for the participant and have completed this consent form on their behalf?Please give your details below. Yes No Representative Name First Last Representative Email Representative PhoneRelationship to the participantSpouseChildPower of AttorneyPaid CaregiverOtherPlease specifyParticipant's Contact DetailsI am:* The participant The participant’s representative Participant's personal details:Name* First Middle Surname Date of Birth* DD slash MM slash YYYY Sex: Male Female Ethnicity (select as many as required)* NZ European Maori Cook Island Maori Tongan Niuean Chinese Indian Other Ethnicity - OtherAddress* Street Address City Region ZIP / Postal Code AfghanistanAlbaniaAlgeriaAmerican SamoaAndorraAngolaAnguillaAntarcticaAntigua and BarbudaArgentinaArmeniaArubaAustraliaAustriaAzerbaijanBahamasBahrainBangladeshBarbadosBelarusBelgiumBelizeBeninBermudaBhutanBoliviaBonaire, Sint Eustatius and SabaBosnia and HerzegovinaBotswanaBouvet IslandBrazilBritish Indian Ocean TerritoryBrunei DarussalamBulgariaBurkina FasoBurundiCabo VerdeCambodiaCameroonCanadaCayman IslandsCentral African RepublicChadChileChinaChristmas IslandCocos IslandsColombiaComorosCongoCongo, Democratic Republic of theCook IslandsCosta RicaCroatiaCubaCuraçaoCyprusCzechiaCôte d'IvoireDenmarkDjiboutiDominicaDominican RepublicEcuadorEgyptEl SalvadorEquatorial GuineaEritreaEstoniaEswatiniEthiopiaFalkland IslandsFaroe IslandsFijiFinlandFranceFrench GuianaFrench PolynesiaFrench Southern TerritoriesGabonGambiaGeorgiaGermanyGhanaGibraltarGreeceGreenlandGrenadaGuadeloupeGuamGuatemalaGuernseyGuineaGuinea-BissauGuyanaHaitiHeard Island and McDonald IslandsHoly SeeHondurasHong KongHungaryIcelandIndiaIndonesiaIranIraqIrelandIsle of ManIsraelItalyJamaicaJapanJerseyJordanKazakhstanKenyaKiribatiKorea, Democratic People's Republic ofKorea, Republic ofKuwaitKyrgyzstanLao People's Democratic RepublicLatviaLebanonLesothoLiberiaLibyaLiechtensteinLithuaniaLuxembourgMacaoMadagascarMalawiMalaysiaMaldivesMaliMaltaMarshall IslandsMartiniqueMauritaniaMauritiusMayotteMexicoMicronesiaMoldovaMonacoMongoliaMontenegroMontserratMoroccoMozambiqueMyanmarNamibiaNauruNepalNetherlandsNew CaledoniaNew ZealandNicaraguaNigerNigeriaNiueNorfolk IslandNorth MacedoniaNorthern Mariana IslandsNorwayOmanPakistanPalauPalestine, State ofPanamaPapua New GuineaParaguayPeruPhilippinesPitcairnPolandPortugalPuerto RicoQatarRomaniaRussian FederationRwandaRéunionSaint BarthélemySaint Helena, Ascension and Tristan da CunhaSaint Kitts and NevisSaint LuciaSaint MartinSaint Pierre and MiquelonSaint Vincent and the GrenadinesSamoaSan MarinoSao Tome and PrincipeSaudi ArabiaSenegalSerbiaSeychellesSierra LeoneSingaporeSint MaartenSlovakiaSloveniaSolomon IslandsSomaliaSouth AfricaSouth Georgia and the South Sandwich IslandsSouth SudanSpainSri LankaSudanSurinameSvalbard and Jan MayenSwedenSwitzerlandSyria Arab RepublicTaiwanTajikistanTanzania, the United Republic ofThailandTimor-LesteTogoTokelauTongaTrinidad and TobagoTunisiaTurkmenistanTurks and Caicos IslandsTuvaluTürkiyeUS Minor Outlying IslandsUgandaUkraineUnited Arab EmiratesUnited KingdomUnited StatesUruguayUzbekistanVanuatuVenezuelaViet NamVirgin Islands, BritishVirgin Islands, U.S.Wallis and FutunaWestern SaharaYemenZambiaZimbabweÅland Islands Country Email* Home Phone*Mobile PhoneNHI Number (if known)GP Name*GP Practice NamePlease choose one of the following:* I have been diagnosed with MND I have a family member with MND I have had a positive genetic test for an MND related gene, but have not been diagnosed Other Please choose one of the following - Other OptionDo you see a neurologist or other specialist privately or publicly? Privately Publicly Type of specialist seen:Name of specialist or location of neurology department:How did you hear about the NZ MND Registry? From my neurologist From my MND NZ Support Worker From information MND NZ supplied Other How did you hear about the NZ MND Registry? - Other OptionAre you also a client of the Motor Neurone Disease NZ support and advisory service?* Yes No If you are the participant’s representative and completing this form on their behalf, please provide your full details:Name* First Last Email* PhoneRelationship to participant:*
