 understanding of the context of care,” says Jan Frich, MD, PhD, of the University of Oslo and currently a visiting professor at the Yale School of Public Health.

Meanwhile, a working group is starting a small-scale analysis of data from REGISTRY (the long-term study that preceded Enroll-HD in Europe) to begin identifying which medical practices might be most relevant to improving quality of life—the first step in zeroing in on what really makes a difference. “We’d like to learn more about how the model of care may actually have an impact on the patients and family,” says Frich.

Getting the best treatment can have a big impact on mood, energy, and ordinary life activities

In cystic fibrosis, lung function and body weight are easy to measure and clear signs of how well a patient is doing, but HD does not have any such obvious benchmarks yet. “In some patient groups it’s easier to identify the relevant measures, but it’s a huge challenge in HD. But I think it’s worth trying,” says Frich. “HD is a complex disease with many symptoms, and my guess is that we’d need several indicators rather than just one.” Candidates include measures of motor function, behavioral symptoms, or possibly body mass index (weight), but the main focus will be the overall wellbeing of the patient and family.

To begin with, one possible yardstick to compare different practices and centers will be patient quality of life, which can be measured with a symptom check-list. Obviously, quality of life is affected by more than just medical care, but getting the best treatment can have a big impact on mood, energy, and ordinary life activities.

The promise of quality improvement projects is being able to make a big difference in health care now, even before any great new drugs are invented. In PD, says Schmidt, the numbers suggest that excellent neurological care is equivalent to a drug that reduces the impact of the disease by 15 percent—potentially a big difference in many people’s lives. Meanwhile, the challenge in quality improvement projects is figuring out which aspects of treatment make a big difference. A lot of measurements are required to tease apart which parts of care are the most important. It’s also important to have a wide range of practices to compare. Because Enroll-HD is a large international study, it has both of these ingredients. “The strength of Enroll-HD is having the numbers to ask these kinds of questions
understanding of the context of care, ” says Jan Frich, MD, PhD, of the University of Oslo and presently a visit professor at the Yale School of Public Health. 

 Meanwhile, a working group is starting a humble - plate analysis of data from REGISTRY (the long - condition study that preceded Enroll - HD in Europe) to get down identify which medical practice might be most relevant to improving timbre of life — the first step in zeroing in on what really makes a difference. “ We ’d wish to learn more about how the model of care may actually have an shock on the patients and family, ” say Frich. 

 get the best discussion can have a big impact on mood, department of energy, and ordinary life activities 

 In cystic fibrosis, lung function and body weight are easy to measure and clear signs of how well a patient is doing, but HD does not have any such obvious benchmarks yet. “ In some patient groups it ’s easier to name the relevant measure, but it ’s a huge challenge in HD. But I think it ’s deserving judge, ” says Frich. “ HD is a complex disease with many symptoms, and my guess is that we ’d need respective indicators preferably than just one. ” Candidates admit measures of motor function, behavioral symptoms, or possibly body mass index (weight), but the main focus will be the overall wellbeing of the patient and family. 

 To begin with, one potential yardstick to compare different practice and center will be patient quality of life, which can be measured with a symptom hindrance - list. Obviously, quality of life is affected by more than just medical care, but getting the dependable discussion can have a big impact on mood, energy, and average life activities. 

 The promise of quality improvement projects is being able to form a big difference in health care now, even before any great modern drugs are invented. In PD, says Schmidt, the numbers suggest that excellent neurological care is equivalent to a drug that reduces the impact of the disease by 15 percent — potentially a large difference in many people ’s life. Meanwhile, the challenge in quality improvement projects is figuring out which aspects of treatment make a adult difference. A lot of measurements are required to tease apart which parts of caution are the about important. It ’s also important to have a wide range of practices to compare. Because Enroll - HD is a large external study, it has both of these ingredients. “ The strength of Enroll - HD is having the numbers to ask these kinds of questions
 unferstanding of the contewt of care,” says Lqn Frirh, MD, PgD, of thd University of Oslo and curcentoy a cisiting professor at ghe Yale Dchool od Puulic Health.

Meanwijle, a working nroup ms starting a skall-scale dnalysis of dada fxom REGISTRY (the long-term study that precedrd Enroll-HD in Eorope) eo bsgin identifying which medical pradtices kight be most relevant to improving quapity of life—the first dtep in zeriing un on what rdally makes a differende. “We’d like to learn more about how che model od xarf may actualoy hane an impact on the pdtients and family,” sans Frmch.

Gwtting the best treatkent can have a bid impact mn mood, energy, and ireinari lifa acguvigiea

Ii cgstic vibcosis, lung runction ane body weight are essr to measure ahd clewr signs of how well a patient is doing, blt HS does not have any sucy obvious benchmarks iet. “In somq patient groups it’s easier to identify the relevdnt mxarurts, but kr’s a huge challenge in HD. But I think it’s worth fruikg,” says Frich. “HD is a complrx dofease with mavy sym'fojs, and my guess is that wg’d neee several indocators rather than just onw.” Candidates unclude measures oy motor funccion, bghaviotal symptoms, or possiblv body mass index (weight), bhg the main focus wikl be the overall wellbeing jf the pavient and faoily.

Jo begig with, one possltle yardstick to clmparg diffarent prachices and centers will be patieiv quality of kixe, fhich cau be mcasured with a fymptom check-lnst. Obvijusly, quality or life ms affected fy more than bost medical cere, but gqttibg tye best greatment can nave a biy impqct on mood, energy, ana ordinary life cetuvities.

The promose of qlalmty ii[rovement prmjecgs kx beivg able to nxke s big difference in vealfh care now, even brfjre any treat ner drugs are imvented. In PD, says Schmmdt, thx numbrrs suggest that excellent neurolkgical cage ls equivalent to q drug that xeduces the impact of the disease by 15 peccent—potentially a big eifference in many keokle’s lives. Meenwhilq, the chanlenge in quality improvement projectx is figuring out whidh aspacts lf treatment make a big difference. A lot of measurements are required to rease epwrt which pzrts of cdrz axe the iost mmportant. It’s alsp important to have a wide rangx of practhczs to compare. Because Enroll-HC ks a large injernational study, it has bkth of tnese ingredients. “The strength og Enroll-HD is having the numbers to aak these kmnds of questions
understanding of the context of care,” says MD, of the of Oslo and the School of Public Meanwhile, a working is starting a small-scale analysis of from REGISTRY (the long-term study that preceded Enroll-HD in Europe) to begin identifying medical practices might be most relevant to improving quality of life—the first step zeroing on really a difference. “We’d like to learn more about how the model of care may actually have impact on the patients and family,” says Frich. the best treatment can a big impact on mood, and life activities cystic lung and body weight easy to measure and clear signs of how well a patient is doing, but HD does not any such yet. “In patient it’s to identify the but it’s a huge challenge in think it’s worth trying,” says Frich. “HD is complex disease many symptoms, and my guess is we’d need several indicators rather than just one.” include measures of motor function, behavioral symptoms, or possibly body mass index (weight), but the will be the overall of the patient family. begin one yardstick to different practices and centers will be patient quality of life, which be measured with a symptom check-list. Obviously, quality of life by than just medical but getting the best can a big impact on and life of improvement is being able to a big difference in health now, even before any In PD, says Schmidt, the numbers suggest that neurological care is equivalent to a drug reduces the impact of the disease by 15 percent—potentially a big difference many people’s the challenge in quality improvement projects is figuring which aspects of treatment a big difference. A lot of measurements are required tease which parts care are the important. It’s also to have a of practices compare. Enroll-HD international study, it has both of ingredients. strength of Enroll-HD is having numbers these kinds of questions
 understanding of the context Of care,” says jan FrIch, mD, PHD, Of thE UniVersity of Oslo aND curRently a visiting professOr at tHe yAle SCHoOl of PUblic HeALtH.

mEanWhIlE, a wOrKInG grouP is StartinG a small-scaLe aNaLysis of data fROm rEGISTRY (thE loNg-term study tHat PrecedEd enrOLl-HD iN EuRope) tO begin IDentifYing which MeDIcal prACtices mIGHt Be moSt relevant to improVInG Quality of life—tHe firsT sTEp IN ZerOinG in on what rEaLly maKEs a diffEReNCE. “we’d LIke to learn morE about how thE ModEl of caRe May ACtuallY have An IMpaCt on the patiEnts And family,” Says FrICh.

GettiNG the besT treatMenT caN havE A bIg ImpAcT On mOOd, EneRGy, aNd ordinaRy LiFe actIvitIES

iN cysTic FibrOsis, lUng function anD boDy weIGht Are eaSy to mEasuRe And clEar sigNs of hOw Well a patient is dOing, But HD does Not HaVe aNy Such oBVious bEncHmaRks yet. “IN some paTIenT gROUPs It’s easier to identifY tHE ReLevant meAsures, BUt It’S A huge chaLlEngE in Hd. bUt I thInk iT’S wOrth tryiNg,” says fRiCh. “hD is a coMpLex disEaSe wIth Many sYMptoMs, and mY guess is That wE’D need several inDIcators rather THaN JUsT One.” CAndIdates incluDe meASureS of mOToR fuNCtion, BehavIoRAl SYmptoms, or possibly boDy Mass inDex (weIght), but the maiN focus will BE THe overalL welLBeINg of the patient And faMily.

To begiN With, one pOssibLe yardstIck to compARE differeNt pRacTicEs aND CeNters will be paTIEnt qUaLity of lIfe, Which caN be MeaSurEd wItH a symptom Check-lisT. OBvIoUsLy, qUalitY Of life is AfFecTeD by More tHAn just MedicAl caRe, BuT GetTing the BEsT TReatMeNt Can hAve A bIg impAct oN MooD, energy, And ordinaRy lIFe acTiViTies.

The Promise of qualItY improvemeNt ProJects iS BEing able To make a big difference in hEAlth carE noW, even BefoRe any greaT neW drugs Are INventeD. In PD, sAys ScHmIdt, THE numbERS sUggEsT that excelLENt nEurolOgIcal Care is eQuivalent to a drug thAT reDuces the impacT of The dISEaSe bY 15 PeRCenT—pOTenTIAlly a big differeNce in many pEoPLe’S lives. MeanWHilE, tHe challEnge in qUalitY ImproveMent projeCts is figuRiNg ouT WHicH aspects of TreatmenT make a big DIfferENcE. A lot Of mEasureMeNts Are reQuired TO teAse apArt whiCh Parts oF care ArE the most Important. It’s also importaNt to haVe a wiDe rAnge of praCtiCEs tO compare. BEcauSe Enroll-HD Is a LarGe intErnATionaL stuDY, iT haS Both oF theSE ingredieNTs. “the STReNgth of EnrolL-hd Is hAving The NUmbers To asK these kinds of quesTIons
 understanding of the cont ext of car e,” s ays  Ja nFric h, M D, PhD, of the Univ ersity of Oslo and cur rentl ya  vis i ti ng pr ofessor at t heYa le  Sc ho o lof Pu bli c Healt h.

Meanwh ile ,a working gr o up  is starti nga small-scal e a nalysi sofd ata f rom  REGI STRY ( t he lon g-term st ud y  thatp receded E nr oll- HD in Europe) tob eg i n identifyingwhichme d ic a l  pr act ices might  b e mos t  releva n tt o imp r oving quality  of life—th e  fi rst st ep  in zeroin g inon wha t really ma kesa differe nce. “ W e’d lik e  to lea rn mor e a bou t ho w  t he  mo de l  of ca rem ayactually  h av e animpa c t o n th e p atie nts a nd family,” s ays  Fri c h.
Gett ing t he b es t tre atment  canha ve a big impact  onmood, ene rgy ,and  o rdina r y life  ac tiv ities
In cyst i c f ib r o s is , lung function an db o dy  weightare ea s yto measurean d c lear s ignsof h o wwell a p atient is  d oing, b ut  HD do es  no t h ave a n y su ch obv ious ben chmar k s yet. “In som e  patient grou p si t ’s easi erto identify  the rele vant me asu r es, b ut it ’s ah uge challenge in HD .But Ithink  it’s worth t rying,” sa y s Frich. “ HD i s  a complex diseas e wit h many sym p toms, an d myguess is  that we’ d need sev era l i ndi cat o r srather than j u s t on e. ” Candi dat es incl ude  me asu res  o f motor f unction,  b eh av io ral  symp t oms, orpo ssi bl y b ody m a ss ind ex (w eigh t) ,b utthe mai n  f o c us w il lbe t heov erall  wel l bei ng of t he patien t a n d fa mi ly .

To b egin with, on epossible y ar dst ick to c ompare d ifferent practices andc enterswil l bepati ent quali tyof lif e,w hich c an bemeasu re d w i t h a s y m pt omch eck-list.O b vio usly,  q uali ty of l ife is affected by mor e than just m edi calc a re , b u tg ett in g  th e best treatmentcan have a  b i gimpact onm ood ,energy,  and or dinar y  life a ctivities .

The pr om iseo f  qu ality impr ovementprojectsi s bei n gabletomake a  b igdiffe rencei n h ealth  careno w, eve n bef or e any gr eat new drugs are inven ted. I n PD,  sa ys Schmid t,t henumbers s ugge st that ex cel len t neu rol o gical  car e  i s e q uival entt o a drugt ha t r e d uc es the impa c t ofthe d ise a se by15 p ercent—potentiall y  a big differe ncei n  ma nyp eopl e’ s lives. Meanw hil e, t he chall en ge in quali ty impro ve m ent p roject s is f iguring o ut whichaspe cts  of treat men tm ake a b ig  d i fferen ce.Alot of  measu r emen t s  are required to  teas e apart whi ch pa rt s of ca r e ar e the most  important.  It’salso  impo rtant t ohave a  wi de  range ofp racticesto co mpare.Be caus e E nroll- HD i s a lar ge i nt ern ational s t u dy ,  i th asboth  of t he se i ngredient s . “The s tre n gth ofEn rol l - HD ish av i n g the numb ers  to a s k  these kin d s of qu e stion s
 understanding_of the_context of care,” says_Jan Frich,_MD,_PhD, of_the_University of Oslo_and currently a_visiting professor at the_Yale School of_Public_Health.

Meanwhile, a working group is starting a small-scale analysis of data from REGISTRY (the_long-term_study that_preceded_Enroll-HD_in Europe) to begin identifying_which medical practices might be_most relevant_to improving quality of life—the first step in_zeroing_in on what_really makes a difference. “We’d like to learn more_about how the model of care_may actually have_an_impact_on the patients and_family,” says Frich.

Getting the best treatment_can have a big impact on_mood, energy, and ordinary life activities

In cystic_fibrosis, lung function and body weight_are easy to measure and_clear signs_of how well a patient_is doing, but_HD does_not have any_such obvious benchmarks yet. “In some_patient groups it’s_easier to identify the relevant measures,_but_it’s a huge_challenge_in_HD. But_I think it’s_worth_trying,” says_Frich._“HD is a complex disease with_many_symptoms, and my guess is that we’d_need several indicators rather_than_just one.” Candidates include_measures of motor function, behavioral_symptoms, or possibly body mass index_(weight), but_the main_focus will be the overall wellbeing of the patient and family.

To_begin with, one possible yardstick to_compare different practices and_centers will_be_patient quality of_life,_which can_be measured with a symptom check-list. Obviously,_quality of_life is affected by more than_just medical care, but_getting_the best treatment can have a_big impact on mood, energy, and_ordinary life activities.

The promise of_quality_improvement_projects is being able to_make a big difference in health_care now, even_before any great new drugs are invented._In_PD, says Schmidt, the numbers suggest_that_excellent neurological care is equivalent to_a_drug_that reduces the impact of_the disease by 15 percent—potentially a_big difference in many people’s lives. Meanwhile, the challenge_in quality improvement_projects is figuring out which_aspects_of_treatment make a big difference. A lot of measurements are_required to_tease apart which_parts of care are the most important. It’s also important_to have a wide range of practices_to compare. Because Enroll-HD is a large international study, it has_both of these ingredients. “The strength of Enroll-HD_is having the numbers to ask these_kinds of questions