In Collaboration with CLL Society - Create a LLS Community ... · In Collaboration with CLL Society...

InCollaborationwithCLLSociety-CreateaLLSCommunityUserAccountThankyoufortakingthetimetoparticipateintheLLSPatientRegistry!Restassured,whilethereareafewstepsthatyouhavetofollow,itwillonlytakeafewminutesandisaveryeasyprocess!Justafewclicksandyourdatawillbeconnected!STEP1:GototheURL–LLS.org/Community

STEP2:Scrolltothebottomofthepagetoaccesstheregistrationscreen.Completetherequestedinformationandclickonthe“Register”button.(Taketimetonoteorcommittomemorytheemailaddressandpasswordyouusedtoregister,asyouwillneedthemlaterintheprocess.)

Note:whilewearerequestingyoutosubmityourdateofbirth,restassureditwillbekeptsecureandencrypted.Enteringyourdateofbirthisimportanttotheprocesssothatwecangetasenseoftheagesofouruserswhoareeitherdiagnosedwithabloodcancerorcaregiversofbloodcancerpatients.STEP3:Thenextscreenwillaskforyourdiagnosiscategory.

EnteryourMonthandYearofdiagnosis;checktheboxfor“Leukemia”andadropdownlistoftypesoflymphomawillbeseen.Clickontheoptionfor“CLL/SLL.”Theformshouldlookasfollows:

Clickonthe“UpdateProfile”buttonandyouwillbetakentothehomepage.Aconfirmingemailwillbesenttoyouandfollowthelinkinthatemailtoconfirmyouraccount(youwillneedtologinagainusingtheUserID(youremailaddress)andPasswordyousubmittedwhensettinguptheaccount).Whenyoulogintoconfirmyouraccountyouwillbeonceagaintakentothehomepageandfromtherethefollowinginstructionswillassistyouinsharingyourmedicalrecords.

CreateaLLSNationalResearchRegistryAccountSTEP1:AfterloggingintotheLLSCommunity,atthetopofyourhomepagefindthefollowingentrybox

STEP2:Withinthisboxtherearethreechoices.ThefirstchoiceistoclicktoreadabriefsummaryoftheprojectaswellasFrequentlyAskedQuestions.Thesecondchoiceisalinktoproceedtosettingupyouraccount.Thethirdchoiceisifyouchoosenottoparticipate.Step3:Afteryouchoosetosetupsharingyourmedicalrecord,theInformedConsentDocumentwillbepresentedinthenextscreen

Step4:Reviewtheconsentandscrolldowntothebottomofthedocumentwhereacceptancewillberequired.Therearethreeitemstobecompletedforconsenttobeapproved–“Accept”,“Understand”,andenteringofyourLLSCommunitypassword.Onceallthreeitemsarecompletedthenclickon“IAgree.”

NOTE:Ifyoudonotcompleteallthreeoftheseconsentitemstheformwillshowthefollowingerrormessagescreenatthetopandbottomoftheform:

Step5:Afteryouagreetotheconsentpressthered“Signin”tosignintoyouraccount.

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Step6:Tocontinuethesigninprocessclickon“Open”

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Step7:TheLLSResearchRegistry“SelectaPortal”screenisnowdisplayed.Tolocateyourportalbegintypingthenameintheentrybox.

Intheexamplebelow,wearelookingforStanford,soIhaveentered“stan”intothesearchbox.

Foryourproviderclickonthenameofyourchoice.Step8:ForthechosenproviderenteryourcurrentPortalUserNameandPortalPasswordforthatproviderandclickon“GetMyRecords.”Thisistheonlyactionyouneedtotaketoshareyourrecords.PleaseknowthattheLLSPatientRegistryiscommittedtosafeguardingyourpersonalcontentandemploysavarietyofmeasuresthataredesignedtohelpprotectyourpersonalcontentfromunauthorizedaccessanddisclosure.NOTE:IfyouwanttoconfirmyouruserIDandpassword,thereisalinkfeaturewithinthe“Help”buttonscreenthatyoucanclicktoopenthehomepageofthatportalandyoucanthenconfirmyourcredentialsbydirectlyloggingintothatsite.

Step9:Afteryourportalconnectionhasbeenentered,youwillbebroughttotheMyPatientPortalsscreenwhereyoucanpressthe“RetrievePatientPortalRecords”buttontoaddadditionalportals.Pleaseaddallyourportals

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Step10:WhenyouhavecompletedyourentriesyoucanlogoutbyclickingonyourUserNameintheupperrightcornerofthepageandclickon“Logout.”NOTE:TheoptionstoUploaddocumentsorUploadImagingStudiesonlyreferstoinformationthatwemayaskfromyouatalaterdateshouldwefindthattheportalrecordsmaybemissingsomepertinentinformation.

Afteryoulogoutpleaseclosethisbrowsersession. ⇑ Step11:YoucanalwaysreturntotheLLSResearchRegistrytoaddnewportalsthroughthe“editprofile”sectionoftheLLSCommunity.Clickonthe“gear”iconandthenthe“editprofile”optionfromthedropdownlist

⇑ WithintheEditProfilescreenclickontheLLSResearchRegistryTab

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