does early treatment with highly effective dmt improve prognosis for people with ms? · 2021. 6....
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[email protected] (US) [email protected] (UK) www.deliver-ms.com
The
Does early treatment with highly effective DMT improve prognosis for people with MS?
APRIL 2021
Springseemstobringop.mismwiththerolloutofthevaccineandsomeli8ingofrestric.onstoourmovement.Weremainop.mis.cthatwithyourhelpwecouldcomplete recruitment this year.We are keen to focus on the randomised armandasksitestotrytorecruit1-2par.cipantspermonth.CheckoutbelowwhichsiteshavefulfilledthistargetsinceMarch.WearedelightedtowelcomeSheffield(UK)asthelatestsitetoopen-welookforwardtoworkingwithDavidPaling(PI)to the DELIVER family. New sites Coventry and Edinburgh both recruited thismonth - look out USA!! We’re delighted to showcase our Pa.ent AdvisoryCommiSeethismonth,whosharetheirexperienceofworkinginthetrial.
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Welcome to the deliver-ms newsletter
DELIVER-MS ENROLLMENT LAST CALENDAR MONTH (overallrecruitmentshownattheendofthenewsleSer)
[email protected] (US) [email protected] (UK) www.deliver-ms.com
DELIVER-MS FOCUS: PATIENT ADVISORY COMMITTEE
Public and pa.ent involvement (PPI) has crucially informed DELIVER-MSfromtheoriginalstudyconcept,totrialdesignandconduct,andwillplayanimportant role in results dissemina.on. In 2018 a Pa.ent AdvisoryCommiSee(PAC)wasformedofpeoplewithMS(withandwithoutscien.ficexper.se), caregivers for people with MS, representa.ves from insurancecompanies (US) and the NHS (UK), DELIVER project managers, a healthoutcomes expert (Dr. DeborahMiller), and the co-PIs (Drs. Ontaneda andEvangelou). The PAC ensures that trial design is appropriate and answersmeaningful ques.ons, advises on recruitment and reten.on, and providestheperspec.veofpublicstakeholdersininterpre.ngstudyresults.Hereweasked members of the PAC to share their experiences of MS, publicinvolvementinresearchandDELIVER-MSinpar.cular.
Clare Bale told us: “DELIVER-MS is an important study forpeople with MS, as we o=en feel scared at the ?me ofdiagnosis, uncertain of disease progression, and of takingmedica?ons.AssomeonewithMSandaPPIlead,Iwantedtocontribute toDELIVER-MS to help clinicians decide themosteffec?ve approach to treatment and to assist people inmakinginformeddecisions,whatevertheircircumstances.
EvenbeforeDELIVER-MSbegan, its researchteam involvedpeoplewithMSto shape the study aims and design. Through the work of the PAC, thatinvolvement con?nues. Given the size of the study and that it is beingconducted in the UK and USA, the research team are excep?onally well-organised, and really listen and respond to the comments of its pa?ents’voice,whichaimtorepresentpeoplediagnosedandlivingwithMS.
Wewould liketothankcurrentpar?cipants. Inmyrole, Io=enhearpeoplesay they want to be involved in research to help others like them in thefuture. DELIVER-MS has the poten?al to do this, so I encourage people toconsidertakingpartifitfitswiththeirneedsandoutlook.”
Anne Schwartz told us: “I am grateful for theopportunitytobeonthePAC.EachpersonalstoryandjourneywithMSisunique.Providingdatatohelpmakeinformedtreatmentchoicescanofferpeaceofmindtothosethatarenewlydiagnosed.Thankyoutoeveryonethathascontributedtothisfantas?cresearch!
[email protected] (US) [email protected] (UK) www.deliver-ms.com
PaulDavistoldus:“IwasdiagnosedwithMS20yearsago.Ineededtostartusingawheelchairaboutfiveyearsago.Ithinkit’simportanttobeinvolvedinstudiestohelpfindasolu?onforMS.ItmakesmefeellikeIamdoingsomethingposi?vetoendthisdiseaseandhelpothers.”Paulalsosharedsomethoughtsthathelpkeephimgoing:
DanOntanedaalsoreflectedontheroleofthePAC:“ThePAChasbeenatremendousassetandguideforourstudy.EverysinglePACmee?ngweleavewithsomeamazingac?onablesugges?onsforimprovementstoourtrial.ThisisakeypartofDELIVER,andhasconvincedmeonhowbringingstakeholderstothetablemakesstudiesandresearchbeZer.IamsothankfulformembersofthePAC.IthasbeenanimmensepleasuretogettobeZerknoweveryone,whowenowconsiderabiggroupoffriendsandpartnersinresearch!"
- Never,Nevergiveup;findaworkaround(apologiesSirWinstonChurchill).
- Par?cipateinMSstudies;itisawaytogivesomethingback.
- TalkaboutyourMSwithothers.ListentowhatotherswithMShavetosay.Youwilllearnalotandtheywillappreciateyourlistening.
- Don’tbeafraidtoyellinfrustra?on-justno?fythosenearbybeforeyoudo.
- Getapet.A4-leggedonepreferred.
- Donotbeashamedorembarrassed.Loveyourself.It’snotyourfault.
BurhanChaudhrytoldus:“MyexperienceofthePAChasbeenwonderfulandaneyeopenereventhoughIhavehadMSforadecade.Hearingotherpa?ents’experienceswiththediseaseandhavingtonavigatethechallengesmademerealizehowothershadmoredifficul?esthanme.EventhoughI'vehadmyownchallengesitcanalwaysbeworse.ThePACgivesmeanopportunitytobeapartofsomethingthatwillmakeiteasierforMSpa?entsinthefuture.Itreaffirmedhowthepublicatlargeisnotfullycomfortablebeingengagedwithresearchandweaspa?entscanbeZeradvocateforit.Iencouragestudypar?cipantstocompletethetrialasitwillhopefullybringaboutaposi?vechangeforMSpa?entsdowntheroad.Andthatisthegoal!!”
[email protected] (US) [email protected] (UK) www.deliver-ms.com
RelevantLinks
Ourwebsiteis:www.deliver-ms.com
Ourmailingaddressis:[email protected](US)[email protected](UK)
DELIVER-MS ENROLLMENT AS OF 12 APRIL 21