>> now, i've worked at nci since 1989-- not 1989; that would be brenda -- 1998, and i've worked in cancercontrol planning since 2001. and i've had the privilege of working inthe u.s. on cancer state, tribe, territory, and pacific island jurisdiction planning. it's a very long title, but they wantto make sure they get that all in there. but in the u.s., we don't have a national plan. the centers for disease control actuallyfund the states, tribes, and territories, and the pacific island jurisdictionsto develop and implement their plans. and nci became involved because wewant to make sure that the plans
that are being implemented use the evidencebase that is funded and is available from nci and from other agencies to support their plans. so, nci in collaboration with cdc work onsurveillance systems, and we want to make sure that the data from those surveillancesystems is really the base of these plans. we've been able to evolve the nationalcancer planning efforts from the u.s. and have been fortunate enough topartner with other international agencies around national cancer control planning,working in latin america, working in europe, partnering with iaea-pact, etceterato come up with some different models for assisting countries in developingtheir national cancer plans.
so, i'm just going to give kind of a broadoverview of what national cancer planning is. i have put a couple of articles inthe back, and they'll be mailed out -- emailed out to you after the presentation. and one of the articles thati brought is an article on developing cancer control plans in africa. and it describes examplesfrom five different countries. and one of the key notes in the discussion ishow national cancer registries are essential to understand the epidemiology of cancer, and tocreate effective policies, and to trace progress in prevention and treatmentfor national cancer planning.
so that's why i'm here with the registriesgroup, to kind of present this topic. so, there are broad goals fornational cancer control planning, and that's whether the planningis happening in the u.s., or if it's happening in another country. now, these four items that i haveup here are really the broad goals for a national cancer control plan. we want to prevent cancer,wherever possible, before it occurs. we want to make sure that we detectcancer at the earliest stages possible, given the situation in the state,tribe, territory, or country.
and we also want to make sure that the -- whenit -- that when cancer is actually diagnosed, that the best treatment that is availableis made available to the patients, and that they are effective therapies. and we want to make sure that there's enhancedsurvivorship, that we're able to assist patients in having the best quality of life, and alsomaking sure that palliative care is available. so, the different modelsthat we have out there -- and i'm going to be going intothose in a future slide -- the different models that wehave, have a lot of similarities. and most of these models really focuson having a collaborative process.
now, the collaborative process may look alittle different, based on where you're at, but in the u.s., what we'vereally tried to do is to make a -- the planning process somethingthat is collaborative. so, at a state level, it mightbe the department of health, partnered with a nongovernmental organizationor multiple nongovernmental organizations, academic research centers, patients, businesses;all of the different individual organizations and partners that have astake in cancer planning and that can bring something to the table. now, we always want to make sure when we'redeveloping a cancer plan that it's based
on data, that there's an evidence as to whywe are including certain focuses in the plan. a plan is really designed to help you prioritizewhere you're going to spend your resources and where you're going toallocate your resources. so, using data from surveillance systemshelps you make decisions about which cancers and which risk factors you want to focus on. and in the u.s., they've usedsurveillance systems such as sear, the behavioral risk factor surveillance system. they've also used local data;whatever data they've had available. we try and encourage people touse the best data available.
and we've been very fortunatethat, over time, in the u.s., the surveillance systems have improved. states have been able to achieve goldstandard status with the cancer registries, the north american -- i'm going toforget the name of it -- naaccr. and they're able to rely on their state cancerregistries to help them prioritize their data. we also want to make sure that once they'veidentified the priorities in their cancer plan, that they're able to identifyevidence-based approaches. whether they're looking atguidelines, or if they're trying to identify specific intervention approaches,
that they're using some formof an evidence-based approach. and we have multiple guidelineshere in the u.s., such as the u.s. preventive servicestask force or the community guide. we also have the website thatwas mentioned in my introduction, called the research tested interventionprograms website, that allows people to go in and identify actual interventionapproaches that conform to guidelines. we also want to make sure, whenpeople are doing their planning, that they're leveraging resources, and that'swhere this collaborative process is so key; that they're able to identify resources fromthe department of health, from businesses,
from nongovernmental organizations; andthat they're working collaboratively, so that they're not duplicating efforts; and that their partnership is actuallyworking towards the goals in their plan. we want plans to be something that is active. a lot of plans can be written, people can cometogether -- you've been to a lot of meetings, probably, where people come together, they comeup with a great idea, they write a document, and then that document goes onthe shelf, and three years later, they come back together and they say, "wow! we really need to do something about this."
when we're talking about cancer planning, we'rereally talking about something that's active, where you can think about having a six- to12-month action plan that's going with it, that actually links back to the plan. so, i mentioned earlier about thedifferent models that there are in cancer planning, and i'vehighlighted three here. the u.s. has a model for cancer controlplanning that's been led by cdc. and they have developed somethingcalled the building blocks; they have these guiding --these guiding documents. there's also been a movement aroundnon-communicable disease planning,
and that has been woven in with the cancercontrol planning efforts in the u.s., so that people that are working in cancerplanning are also trying to tie their efforts in with the non-communicable disease planning. and we're trying to do thatalso at the international level. the uicc has a cancer planning guidethat's available, and the who also has a -- has some cancer planningguides that i've noted here. so, this is the first document that i eversaw when i started working on cancer planning. and it's a logic model that we'veused in partnership with cdc to really identify what needs to come together,what are the inputs that need to come together
in order to develop a cancer plan. and you'll see on the far left side thatstrengthening data foundations is critical as one of the components for developingan integrated and coordinated plan. and when you work through this,you really see that they focus on how do you build partnerships, mobilizesupport, strengthen those data foundations. you want to assess the current infrastructure. what's your ability to actuallyimplement these plans? what types of activities are currently going on? and what are the outcomes of these activities?
you want to focus on collecting and utilizingdata, and evaluation, and assessing the burden. if you do all of these, you're able tokind of go through this if-then model with the ultimate goal of outcomesbeing decreased morbidity and mortality, health disparities -- decreased healthdisparities, and increased quality of life, which you must have registrydata for in order to measure. it's great to have a plan, but youneed to be able to track your progress when you're doing your [inaudible]. so, these are essentially the building blocksthat were mentioned in that logic model. enhancing infrastructure; the fundsthat cdc gives to the states, tribes,
territories, etcetera is very small. it does not fully fund the developmentand implementation of their plans. it's essentially seed money. there is a whole partnership around cancercontrol planning at the national level that also assists with providingtechnical assistance. and nci is one of the national partners;susan g. komen, lance armstrong foundation, north american association of centralizedcancer registries; we have c-change. there's a whole -- i want to saythere's probably about 20 organizations at the national level that have convenedtogether to help do technical assistance
and to help people think throughhow do you enhance infrastructure? how do you mobilize supportat the state and local level? how do you get people to the table to talkabout the issues and the needs around cancer? and how do you utilize data? how do you access those registries? how do you make the linkages withinyour state to these registries? and how do you tell a story with data? because it's great to have accessto the data, but when your talking about a national cancer plan, that data has tobe able to be kind of synthesized into a manner
that can be communicated to a policymakerin a very easy-to-understand format. also, if you're going topublicize what you're doing, having data that's understandableis very important. we've also focused some technicalassistance around building partnerships, assessing and addressing the cancerburden, and then conducting evaluation. so, these are two documents that have beenused in international cancer control planning. and you can go online and pull theseoff of the web; they're open access. and they really talk about different stepsand different models for walking through, but they're very similar to the model in theu.s. and it's made it very easy for the u.s.
to collaborate with international partners. so, uicc has a "toolkit forcivil society organizations." and their approach is a little bit differentthan the u.s. but has a lot of similarities. we want to know what the cancer picture is;we want to understand, how do you develop some of these collaborations so that youcan implement a cancer control plan? what should be included in the plan? how is it going to be communicatedand implemented? and what is a successful plan? how are you going to -- howare you going to make sure
that you set out goals that are achievable? and the document that they had -- this toolkit,is a step-by-step process that can be used by countries to work towardsdeveloping a national cancer plan. the who, another framework, very similar. you can see it talks about what's the cancerproblem, defining the target population, setting goals and objectives, and howdo you get there; raising resources, so that's enhancing infrastructure; makingsure that the teams are multidisciplinary, that you're bringing together a collaborativeprocess; and evaluation is built in. now, the reason why i'm showing thesedifferent models is really because there are --
there's a national -- an internationalpartnership that has come together to focus on cancer control planning. now, i'm going to take a step back, andi'm going to talk about what has happened in the u.s., because that's what i know best. cancer control planning in the u.s. hasbeen around for over a decade, and the -- we're getting to know what is really -- caused the success or the challenges incancer planning at the state and local level. and internationally and nationally here in theu.s., i think resources are a constant question that people have about developing theirnational cancer plan or their state plan.
i mentioned that cdc only funds asmall portion of a state's cancer plan. they fund dedicated staff at the statelevel, and acs has some staff that assist in cancer planning; cdc, we do --i mean nci, we have some resources that we make available onlineto support cancer planning, but it by no means funds a state'scancer plan and the implementation of it. so there's always a challengein developing a plan and trying to figure out how do you resource it? because it's not an easytask to try and figure out; how do you implement a plan that's actuallygot money behind it, and resources, and people?
that's why we need to havethis collaborative process. i think one of the greatest successes we'vehad in the u.s. is our surveillance system. when i first started working in cancer planning, we developed a website calledcancer control planet, and on that was a websitecalled state cancer profiles. and on state cancer profiles, there'sthis wonderful way of being able to access local data, because people want tobe able to tell their story with their data. they don't want to just have thenational data, which is important; they want to know what ishappening in their community.
and when we initially started, the datawas not available for all of the states down at the local level, because they didn'tmeet the quality standards that we had set in state cancer profiles website. well, we started presenting on state cancerprofiles and showing the registry data and how it could be utilized, andan interesting thing happened. when people realized that their data wasn'tup there, they started questioning why. and i think that there was a largemovement towards improving registry data at that point, anyway. so there was, kind of, this meeting of -- therewas this opportunity to get the data improved.
and in the u.s., all of the stateshave their cancer data available now in state cancer profiles,both incidence and mortality, and they're able to get datadown to the county level. and they can show, in nice pictures andgraphs, what their cancer issues are, that can be easily communicated viathe state cancer profiles website. we've had a lot of strongly committedpartnerships in the u.s. and i want to say that, in the u.s., the cancer planning effortshave been a little bit like this. some states have been very high andhad a lot of strong partnerships. there have been some states thathave really struggled with trying
to pull together the right partnerships. and it doesn't always happenon the first go-round. sometimes it -- they have great partners thatare able to come together to develop the plan; but when they move towards implementation, theystruggle with it, because the same partners that were at planning may be-- may need to be different when they're actually implementing a plan. but the national partnership has remainedstrong, and the focus at the state level, because of cdc's focus on havingplans, has really been integral. i think that there's a lot ofpolitical will around cancer planning
in the u.s. we have an organizationin the u.s. called c-change. it was originally founded bypresident bush and dianne feinstein, former president and a legislator. we've had a lot of governors involved. so, we actually have had some good,strong support in the u.s. that's focused on supporting cancer control planning. and we've had the ability to actuallydo trainings for people in the u.s. around multiple topics relatedto cancer control planning. and we've done these leadership institutes wherewe've brought together 10 to 12 key leaders
from each state, and had them cometogether for a weeklong training institute, and focus on issues, and work on action planningfor their state plans, and leave the institute with a six- to 12-month action agenda. and that's helped move the process forward,and we've actually started to try and adapt that model for international planning. so, i mentioned before that therewas an international partnership around cancer control planning. it launched last november, and thereare a number of organizations that -- i can see that i've droppedsome of the text off of here --
but international organizations such as the who,uicc, nci, cdc, the american cancer society, iarc, iaea -- international atomic energyagency, and i know i'm missing some. but you see here, we've cometogether because we realized that each of our organizations are doingsome work internationally, but we don't necessarily know what all the otherorganizations have been doing internationally around cancer planning. so, we have a desire to try and coordinateour efforts in providing technical assistance for cancer planning, andyou see what our vision is. we have multiple priorities;we really want to advocate
that countries make cancer controla priority, that we use the networks through this partnership to reachout to country decision-makers to make cancer planning a priority. รข we want to advocate, actually want touse the iccpp networks to reach out -- this is what i just said -- encouragethem to make cancer control priority, jointly assist countries to develop andimplement quality cancer control plans, and then also try and coordinate our efforts. and we have a new website that ican show -- i'll show at the end --
that provides access to a number oftools; the tools are tools from all of the organizations focusedon cancer control planning. and we've done a comprehensive searchof national cancer control plans, so every country's plan that we've been ableto find available is actually in one place. so we have this web portal, and we're seekingfeedback right now; we're in the process of doing usability testing for thewebsite this week through august -- actually, the first week in august. the uicc has a global educationand training initiative. iarc has a "cancer surveillancefellowship and training" course
that they're implementing that'sdirectly related to this partnership. we're -- nci is sponsoring leadership forums;our first leadership forum is going to be in turkey in september, and it's goingto be bringing together countries from the middle east and north africa. the iaea-pact has missions thatthey've been conducting for years that have been supportingcancer control planning. and i'm quickly going to go to the [inaudible]. >> brenda edwards: okay, sort of likedouble jeopardy; not only the slides, but they wanted to hear your voice.
well, let me say thank you very much forthe opportunity to talk with you today. the topic i've been assigned is "cancerregistries in low and middle income countries." as noted, i think those of youin this audience are the ones who could actually writethe major talking points. one, not enough -- not enoughdata, and we need to do more. so, in a way i'm going to be trying topaint a picture about some of the evidence, some of the commentary onthat particular observation. the key messages, as you've heard fromsandy and from others say clearly, population-based cancer registries area key role in cancer control planning.
they help you plan, monitor, evaluate,target interventions, assess what -- sort of the impact of what you've done. so, this is sort of the major points if anyoneever ask you why do you need a registry, you can look to this talking points. and you've also seen data, i think, thattalks about the global burden of disease. here we have a chart; in the pink, you'll seethe actual number of cases that are estimated for 2008; the green part is howthat will increase for 2030. it's the display by world bank categoriesof the income levels of countries. and you'll see that low middle incomecountries are where we're likely
to see the greatest and largest growth in 2030. and so, that says that we really dohave to focus on some of the areas and improve our ability totrack the occurrence of cancer. so, a few references. just to sort of, again, what cani say that you don't already know or that might help you takea resource away from here? certainly, everyone knows of max parkin, spentlots of years at the international agency for research on cancer, has spent lots -- isquite knowledgeable about cancer registries. a few years ago, he wrote an articleon the evolution of cancer registries;
i thought that actually might be one of thebetter summaries of what we know about them and the different flavors in which they come. the other one is the international associationof cancer registries has put a history together. again, i'm telling you this because i thinkanother thing that's clear is you have to work together, whether it's in yourown country or within your own region. but what we've also seen in the lastfew years is the global initiative for cancer registry development in lowand middle income countries called gicr. it is hosted at iarc, and i'm going to talka little bit more about that to explain sort of where that program is growing -- going.
but before we get there, let me sort ofget a bit more into some of the issues about cancer registries, and the datathat you collect, and how you might go about assessing its accuracy or thecomparability in comparing your data over time or with other registries. there are a couple of articleswhich i presented; they were written a few years agoby max parkin and freddie bray. but i do think that they represent perhaps oneof the contemporary summaries of the things that you might want to bestriving for as you're looking, assessing your own registries, the data in it.
the last one called "completeness" is reallythe completeness of the cases that you have in a timely manner, and i assure you thatthat's the most difficult measure and is the one that sometimes is most controversial, but it actually is an importantfeature of your [inaudible]. i've put here a quote thatiarc presented in the -- in 2011 that essentially goes on record sayingthat population-based cancer registries, particularly in lmic locations, is needed. and they go on and talk aboutwhy it's such an important point. again, things we've said over and over again.
it also links into going intoearly detection screening programs. but let me just say that sort of the iarchas had a longstanding interest in this area, but there's been an enthusiasmand infusion of interest in a program that's been puttogether; it's called the gcr. well, why did they -- someone you might askus -- don't -- how do we know there's a -- there's more data needed incertain parts of the world? and here's data from 2007, thecancer incidence in five continents, that indicates that certainly in northamerica, oceania, we have well over 80% of the population routinelycovered by high-quality data.
it's about a third in europe;it is actually growing. but where we would see the limitedamounts of data is in latin america, asia, and africa; things that you already know. but, again, this -- in 2007,this was sort of made very clear. the international association of cancerregistries has been around for quite some time, and it has quite a number of members;well over 400 in over 100 countries. the data that they may call for andpublish is less than 20% of the world, but in fact it actually is a smallerpercentage of the data from certain regions. and so, we have publications that are out there,we have assessment of the quality of data,
and so i think this is sort ofa statement of the evidence. what i put here is that in -- this year,we anticipate volume 10 coming forth. i thought it was coming outearly part of the year; i'm hoping it will be outby the end of the year. i don't know any of the results. i wish i did; they don't let me in on it; i'mnot an [inaudible]; but i hear its coming. but i think as one looks at whatare the problems that registries in lower middle income countriesface, here's the laundry list. you could probably add your own.
it has to do with the infrastructure of yourhealth care system, the knowledge that you have or don't have with regardto your medical records. it has to do with technicaltraining of your staff. and it also has to do with youradministrative public health structure, in which maybe the registry is not apriority, or it just doesn't compete with other issues you have in your country. so, the global initiative, as i said, hasbeen talked about for a number of years. it was formally launched in 2011. their goal and approach thatthey're taking is a partnership,
but it's to create a globalnetwork of regional hubs. they're going to focus on support, training,and also an infrastructure that allows you to do research later on, butalso to work within your -- the networks of the cancerregistries in these arenas, and it's also to have an interest in advocacy. now, over here you'll see the icons of --the logos of many of the partners; the nci, the national cancer institute, is a partner. we have some question about whether or not youcan use logos in public ways; so we're there, but we don't have our logo there.
this was actually worked -- this -- thereare many partners, one of which is the uicc, but the first regional hub occurred intata memorial centre in mumbai in 2011. they actually have agreement signed for thesecond hub, which will be in izmir, turkey. they are working this, in the next few months, over where the third hub might be,which will be in latin america. but they also have a hub that is partof the african cancer registry network; it actually exists, but it's of aslightly different character in the sense that it's a -- i call it more the virtual hub. and so they actually have threeand one that is in development.
here's a summary of some of the activitiesthat go on within this hub structure. this comes from some of the activitiesthat are coming out of the mumbai hub. you'll see here that there's a fairamount of training that occurs there, in the location of the hub; thiswas as well as in the region. they also are setting up cooperative researchagreements with other registries in the area, and they also are supporting research. now, i think the research is a littlebit more in the descriptive, epi arena, or publishing data from these regions, but that is a landmark activity that's notoccurred before because of the lack of data.
so, i'm going to stop now by saying this issort of what i know -- [coughing] excuse me -- about cancer registry developmentin low and middle income countries. and we'll continue on with talkingabout -- thank you very much -- with the work that's been-- that's going on in china. thank you. [ applause ] [ silence ] >> ying zheng: thank you,brenda, to interest me, too. it's my pleasure to be here to representsome cancer registry activities in china
as an example for this additional lecture. i will talk about the developmentof cancer registry in china, and what data a cancer registrycollect in china. and due to the cancer researchers and alsowill note that china is in a rapid transition; it's a society with a rapidtransition, so a lot of [inaudible] -- risk factors changes during therecent years, so further more interest in doing cancer research in china. so i will provide some information on how toaccess cancer data from china and then some -- introduce some data publicationsand the [inaudible], too.
as you know, the oldest cancer registry in theworld is the hamburg cancer registry in german, which was established since 1929. 30 years after the first cancerregistry established in china. it's located in lin county. originally in china, the cancer registry wasinitiated by scientific research funding. i think maybe a lot of country, theircancer registry will beginning like this. and the real meaning of population-basedcancer registry was shanghai cancer registry, established in 1963. why i say it's a real meaning population-basedcancer registry, it's because in lin county
and only several sites of cancer --several cancer sites be registered, like stomach cancer, esophaguscancer, like this. they don't register all kinds of cancer. the shanghai cancer registry it's a populationbased and register all sites of cancer. normally in china if you wereto initiate a cancer registry because they're usually not verygood resources, you can use, so in the past years mostly the cancerregistry will initiate bio-scientific research for this activity. mostly the cancer registrars are from hospitals.
and the cancer registry should beaffiliated with some kind of institutes, mostly cancer research institutes. and after a period of development, moreand more people realized the importance of cancer registry so they are seekingcontinuous funding from the government. because if the funding is just for scientificresearch funding, when the research ends, the support for cancer registry also ends. so more and more cancer registrythey are looking for that support from the local government so itcan make the registry continuous. so like searching for the support fromthe government, there is a very important,
one thing is very important isthat they need some regulations or local policies to support cancer registry. because in china if you want, they'd reform thehospitals, you want the data that is collected as a form of the government from thehospitals you should have a special like public policies or regulations. otherwise, you cannot get the data or you justcan't get the data not complete all collected cannot go with the guidelines. so regulation is quite an importantissue for the local cancer registries. so this slide showed cancer registries at thedevelopment in china in the recent 25 years.
you can see in the recent 10 years thecancer registries developed very quickly. you can see in 2003, there is only 36 cancerregistries all over china, but now there is 222. so in the recent 10 yearsit developed very fast. this is because there is a bigfunding from the central government. since 2003, the central government put quite alot of money for the planning the development for cancer registry all over china. and this slide also showed cancerregistries, the number of cancer registries which data accepted by cr5as [inaudible] mentioned. the cr5 [inaudible] publishedcr5 every five years,
so the all you denied the cr5 registriesthe data accepted by cr5 as i know to now for the tenth volume of cr5 only that[inaudible] in 12 cancer registries accepted. so you can see on the cancer registry, thenumber of cancer registries increased very fast. but the data, the quantity of data developedor increased not as fast as the number. and every year the national cancercenter will publish annual report based on the data collected by the cancer registries. not all the cancer registries dataaccepted by the national annual report. in 2012 only 72 cancer registriesaccepted by this annual report. this cancer registry covers 24 provinces.
you know that there is 31 provinces in china,so not every province has their cancer registry. and in this cancer registry 31 in cities and31 in counties, urban and in the rural area and totally covers 85 million population, and accounts for like 60.4% ofthe whole chinese population. all those cancer registries, they areaffiliated in two kind of institutes, 18 of them are affiliated in cancer hospitals or cancer research institutes,and there are 54 in cdc's. in china, the disease prevention the two systemnot quite like in u. s. we have a national cdc and then there are prevention cdc and thenthe other prevention the cdc or county cdc.
so altogether there might be like 3000cdcs in different levels in china, so another cdc take the responsibilityfor data collecting and data medical forecasting registry. so i hope to collect the data inchina, so i will take shanghai as an example because i know her best. in shanghai, cancer registry data work is basedon disease prevention and the control network, and there is 180 hospitals in shanghai. they have the ability to diagnose cancer, and so in shanghai the community base[inaudible] the health service centers,
they don't have the ability to diagnosecancer, so they are the hospitals they are like the general hospitalsare a special hospital. they have the ability to diagnose cancer. there is a revelation in shanghaithat every hospital have the ability to diagnose cancer, should report cancer cases. so they will report cancer cases, both in - they will report cancer casesin paper form or electronically. and then those information willcome into a local or district cdc, and then after data input checking coding andthe death certificate checking those procedures,
those data will come into this wholecdc who will do some case solidification and the validation ordered and then we willpublish the annual reporting committees to cdc [inaudible]. and also in this system we not onlycollect data of cancer incidents and the mortality we also collect data ofcancer outcomes, survival or so we do this in the community health service centers. i will explain this more detailed later. this is our cancer report cards. all those information collected in thosehospitals will follow the guideline
by like he posts address, their name andthen which hospital did the diagnosis is, the details of diagnosis, andthe histological information. and also we collect data of the stateof diagnosis and the basis of diagnosis. so why we also collect dataof that state of diagnosis because our cancer registry will [inaudible] for cancer prevention programlike a screening program. so like i said, we try to collect the stages,but it's also very hard work because only like 16% of cases can provide stage information. and though we are now using a informationsystem for cancer registry and the patient
to follow opt to support ourcancer registry daily work. in this cancer registry information system,we establish the data base of cancer cases. now accumulating 700,000 cases recorded. it also includes histological cases,and also we do patient follow up, the most active and the [inaudible]. so for [inaudible], we use deathcertificate system to do detailing to get their death information, and also wewill cooperate with a community services system to get active follow up information because in shanghai the governmentadded cancer patient community service
into the primary house service system. so if the patient [inaudible] committed thehouse doctors will visit the patient regularly at least once per year, provideinformation they need and also their most symptoms can betreated in community health services. so these services can get alot of follow up information to our cancer registry and data base. and these are the sheets thatthe cancer patient home visit when they do a home visit they collectthen information and then we suggest to use this kind of form to collect data.
so in those forms we can collect thepatient's data on their height, their weight, their history of smoke and their first symptombefore diagnosis, and the date the diagnosis or coming to the doctor, and also thedifferent hospitals they get cancer treatment like chemotherapy, surgery,[inaudible] etcetera. and also we collect if possible,their history family history of tumor. and also in a municipal level in our cdc,we will do some work on quality assurance, so we followed our registration guideline by[inaudible] and we training the [inaudible] and we used to train them those diseaseclassification, their terminology, the diagnosis and the treatments and alsothe computer skills to we have
like a 16 person working localcdc level as cancer registrar. so in this group can be well trained and alsowe did the quality control audit to make sure that the data are complete and accurate. in our shanghai cancer registry wepublish annual report every year and also we publish a [inaudible] historyreport and also we submit data to ci5 and also we cooperated with like cancer researchinstitutes and the other our research group for the researchers our cancerprevention, the cancer [inaudible]. we like provide cases for case controlstudies and their cohort studies. and for shanghai cancer registry itself, werun a shanghai breast cancer cohort study,
and it accumulated to 5000 breast cancer cases. we also use the data from cancer registryto use the education, the health education to design some fact sheets to servefor the public or the government. this is one of the example, we tellpeople that there is 129 persons diagnosed with cancer newly every day in shanghai. and every day there is 82% died of cancer andthat there is 250,000 cancer survivors living in shanghai and though weprovide those data to the public. and if you are interested in the researchersare related to china, you can access the data from cancer registries inchina and also in shanghai.
and this is the [inaudible] andthey publish [inaudible] and global and brenda has some introduction on this. so in ci5 you can find several cancerregistries data from china also from global [inaudible] you canfind an estimation of cancer burden and most mortality incidents andsome prevalence here from china. so you can use ci5 to find the registries data. you can see this is a list of thedata from chinese registries of ci5, and since the fourth edition, you can findthe data from hong kong and shanghai and then after the fourth edition, every editionyou can find the data from china.
and also you can use global [inaudible]. this is the website to use the online[inaudible] to look for the incidents and mortality and the prevalencedata from china. and this is chinese cancer registry report. we have this national report since2004, and this is our annual report. so you can find a report thefive years accumulate report, and also you can find thehistological report since like 1970's. so those reports are publishedand i think that the annual report since 2004 you can find boththe english and the chinese.
and beside this also you can getsome more detailed information or data from cancer registry like in shanghai,we also publish like our annual report. and also you can access the follow update ofcourse we use passive and the active follow up, so and the clinicians all oncologistscan present their suggestions or proposal for data usage and after special proceduresget approved so they can do their detailing so they can look into our database theoutcome of the patients they are follow up. and also if there are other studies or projectsproposed so they can come check with us to get necessary procedure to getapproved, so a lot of physicians or oncologists will use to our data.
they will ask a lot of questions like whyyou can't provide the most recent data so we always tell them because theyretro a lot of data always delay but you can use several years ago toestimate the current situation and also in china you can find ournational statistics data not only from those annual reportspublished by cancer center. also you can several national[inaudible] from cancer mortalities. the data also very useful, and also physiciansor oncologists will look for survival data for the cases they follow up, so they canfollow the special procedure to get those data. okay, that's all for my presentation.
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