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>> Now, I've worked at NCI since 1989 -- not 1989; that would be Brenda --
1998, and I've worked in Cancer Control Planning since 2001.
And I've had the privilege of working in the U.S. on Cancer State, Tribe, Territory,
and Pacific Island Jurisdiction Planning.
It's a very long title, but they want to 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 actually fund the states, tribes, and territories,
and the Pacific Island jurisdictions to develop and implement their plans.
And NCI became involved because we want to make sure that the plans
that are being implemented use the evidence base that is funded and is available from NCI
and from other agencies to support their plans.
So, NCI in collaboration with CDC work on surveillance systems, and we want to make sure
that the data from those surveillance systems is really the base of these plans.
We've been able to evolve the national cancer planning efforts from the U.S.
and have been fortunate enough to partner with other international agencies
around national cancer control planning, working in Latin America, working in Europe,
partnering with IAEA-PACT, etcetera to come up with some different models
for assisting countries in developing their national cancer plans.
So, I'm just going to give kind of a broad overview of what national cancer planning is.
I have put a couple of articles in the back, and they'll be mailed out --
emailed out to you after the presentation.
And one of the articles that I brought is an article
on developing cancer control plans in Africa.
And it describes examples from five different countries.
And one of the key notes in the discussion is how national cancer registries are essential
to understand the epidemiology of cancer, and to create effective policies, and to trace progress
in prevention and treatment for national cancer planning.
So that's why I'm here with the registries group, to kind of present this topic.
So, there are broad goals for national cancer control planning,
and that's whether the planning is happening in the U.S.,
or if it's happening in another country.
Now, these four items that I have up 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 detect cancer at the earliest stages possible,
given the situation in the state, tribe, territory, or country.
And we also want to make sure that the -- when it -- that when cancer is actually diagnosed,
that the best treatment that is available is made available to the patients,
and that they are effective therapies.
And we want to make sure that there's enhanced survivorship, that we're able to assist patients
in having the best quality of life, and also making sure that palliative care is available.
So, the different models that we have out there --
and I'm going to be going into those in a future slide --
the different models that we have, have a lot of similarities.
And most of these models really focus on having a collaborative process.
Now, the collaborative process may look a little different, based on where you're at,
but in the U.S., what we've really tried to do is to make a --
the planning process something that is collaborative.
So, at a state level, it might be the Department of Health,
partnered with a nongovernmental organization or multiple nongovernmental organizations,
academic research centers, patients, businesses; all of the different individual organizations
and partners that have a stake in cancer planning
and that can bring something to the table.
Now, we always want to make sure when we're developing a cancer plan that it's based
on data, that there's an evidence as to why we are including certain focuses in the plan.
A plan is really designed to help you prioritize where you're going to spend your resources
and where you're going to allocate your resources.
So, using data from surveillance systems helps you make decisions about which cancers
and which risk factors you want to focus on.
And in the U.S., they've used surveillance 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 to use the best data available.
And we've been very fortunate that, over time, in the U.S.,
the surveillance systems have improved.
States have been able to achieve gold standard status with the cancer registries,
the North American -- I'm going to forget the name of it -- NAACCR.
And they're able to rely on their state cancer registries to help them prioritize their data.
We also want to make sure that once they've identified the priorities in their cancer plan,
that they're able to identify evidence-based approaches.
Whether they're looking at guidelines, or if they're trying
to identify specific intervention approaches,
that they're using some form of an evidence-based approach.
And we have multiple guidelines here in the U.S.,
such as the U.S. Preventive Services Task Force or the Community Guide.
We also have the website that was mentioned in my introduction,
called the Research Tested Intervention Programs website, that allows people to go in
and identify actual intervention approaches that conform to guidelines.
We also want to make sure, when people are doing their planning,
that they're leveraging resources, and that's where this collaborative process is so key;
that they're able to identify resources from the Department of Health, from businesses,
from nongovernmental organizations; and that they're working collaboratively,
so that they're not duplicating efforts;
and that their partnership is actually working towards the goals in their plan.
We want plans to be something that is active.
A lot of plans can be written, people can come together -- you've been to a lot of meetings,
probably, where people come together, they come up with a great idea, they write a document,
and then that document goes on the 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're really talking about something that's active,
where you can think about having a six- to 12-month action plan that's going with it,
that actually links back to the plan.
So, I mentioned earlier about the different models that there are
in cancer planning, and I've highlighted three here.
The U.S. has a model for cancer control planning that's been led by CDC.
And they have developed something called the Building Blocks;
they have these guiding -- these guiding documents.
There's also been a movement around non-communicable disease planning,
and that has been woven in with the cancer control planning efforts in the U.S.,
so that people that are working in cancer planning are also trying to tie their efforts
in with the non-communicable disease planning.
And we're trying to do that also at the international level.
The UICC has a cancer planning guide that's available, and the WHO also has a --
has some cancer planning guides that I've noted here.
So, this is the first document that I ever saw when I started working on cancer planning.
And it's a logic model that we've used 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 that strengthening data foundations is critical
as one of the components for developing an integrated and coordinated plan.
And when you work through this, you really see that they focus
on how do you build partnerships, mobilize support, strengthen those data foundations.
You want to assess the current infrastructure.
What's your ability to actually implement 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 utilizing data, and evaluation, and assessing the burden.
If you do all of these, you're able to kind of go through this if-then model
with the ultimate goal of outcomes being decreased morbidity and mortality,
health disparities -- decreased health disparities, and increased quality of life,
which you must have registry data for in order to measure.
It's great to have a plan, but you need to be able to track your progress
when you're doing your [inaudible].
So, these are essentially the building blocks that were mentioned in that logic model.
Enhancing infrastructure; the funds that CDC gives to the states, tribes,
territories, etcetera is very small.
It does not fully fund the development and implementation of their plans.
It's essentially seed money.
There is a whole partnership around cancer control planning at the national level
that also assists with providing technical assistance.
And NCI is one of the national partners; Susan G. Komen, Lance Armstrong Foundation,
North American Association of Centralized Cancer Registries; we have C-Change.
There's a whole -- I want to say there's probably about 20 organizations
at the national level that have convened together to help do technical assistance
and to help people think through how do you enhance infrastructure?
How do you mobilize support at the state and local level?
How do you get people to the table to talk about 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 within your state to these registries?
And how do you tell a story with data?
Because it's great to have access to the data, but when your talking
about a national cancer plan, that data has to be able to be kind of synthesized into a manner
that can be communicated to a policymaker in a very easy-to-understand format.
Also, if you're going to publicize what you're doing,
having data that's understandable is very important.
We've also focused some technical assistance around building partnerships,
assessing and addressing the cancer burden, and then conducting evaluation.
So, these are two documents that have been used in international cancer control planning.
And you can go online and pull these off of the Web; they're open access.
And they really talk about different steps and different models for walking through,
but they're very similar to the model in the U.S. And it's made it very easy for the U.S.
to collaborate with international partners.
So, UICC has a "Toolkit for Civil Society Organizations."
And their approach is a little bit different than 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 you can implement a cancer control plan?
What should be included in the plan?
How is it going to be communicated and implemented?
And what is a successful plan?
How are you going to -- how are 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 towards developing a national cancer plan.
The WHO, another framework, very similar.
You can see it talks about what's the cancer problem, defining the target population,
setting goals and objectives, and how do you get there; raising resources,
so that's enhancing infrastructure; making sure that the teams are multidisciplinary,
that you're bringing together a collaborative process; and evaluation is built in.
Now, the reason why I'm showing these different models is really because there are --
there's a national -- an international partnership that has come together
to focus on cancer control planning.
Now, I'm going to take a step back, and I'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. has been around for over a decade, and the --
we're getting to know what is really --
caused the success or the challenges in cancer planning at the state and local level.
And internationally and nationally here in the U.S., I think resources are a constant question
that people have about developing their national cancer plan or their state plan.
I mentioned that CDC only funds a small portion of a state's cancer plan.
They fund dedicated staff at the state level, and ACS has some staff that assist
in cancer planning; CDC, we do -- I mean NCI, we have some resources
that we make available online to support cancer planning,
but it by no means funds a state's cancer plan and the implementation of it.
So there's always a challenge in developing a plan and trying
to figure out how do you resource it?
Because it's not an easy task to try and figure out;
how do you implement a plan that's actually got money behind it, and resources, and people?
That's why we need to have this collaborative process.
I think one of the greatest successes we've had in the U.S. is our surveillance system.
When I first started working in cancer planning,
we developed a website called Cancer Control Planet,
and on that was a website called State Cancer Profiles.
And on State Cancer Profiles, there's this wonderful way of being able
to access local data, because people want to be able to tell their story with their data.
They don't want to just have the national data, which is important;
they want to know what is happening in their community.
And when we initially started, the data was not available for all of the states
down at the local level, because they didn't meet the quality standards that we had set
in State Cancer Profiles website.
Well, we started presenting on State Cancer Profiles and showing the registry data
and how it could be utilized, and an interesting thing happened.
When people realized that their data wasn't up there, they started questioning why.
And I think that there was a large movement towards improving registry data
at that point, anyway.
So there was, kind of, this meeting of -- there was this opportunity to get the data improved.
And in the U.S., all of the states have their cancer data available now
in State Cancer Profiles, both incidence and mortality,
and they're able to get data down to the county level.
And they can show, in nice pictures and graphs, what their cancer issues are,
that can be easily communicated via the State Cancer Profiles website.
We've had a lot of strongly committed partnerships in the U.S. And I want to say that,
in the U.S., the cancer planning efforts have been a little bit like this.
Some states have been very high and had a lot of strong partnerships.
There have been some states that have really struggled with trying
to pull together the right partnerships.
And it doesn't always happen on the first go-round.
Sometimes it -- they have great partners that are able to come together to develop the plan;
but when they move towards implementation, they struggle 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 remained strong, and the focus at the state level,
because of CDC's focus on having plans, has really been integral.
I think that there's a lot of political will around cancer planning
in the U.S. We have an organization in the U.S. called C-Change.
It was originally founded by President 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 actually do trainings for people in the U.S.
around multiple topics related to cancer control planning.
And we've done these leadership institutes where we've brought together 10 to 12 key leaders
from each state, and had them come together for a weeklong training institute,
and focus on issues, and work on action planning for 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 there was an international partnership
around cancer control planning.
It launched last November, and there are a number of organizations that --
I can see that I've dropped some of the text off of here --
but international organizations such as the WHO, UICC, NCI, CDC, the American Cancer Society,
IARC, IAEA -- International Atomic Energy Agency, and I know I'm missing some.
But you see here, we've come together because we realized that each
of our organizations are doing some work internationally,
but we don't necessarily know what all the other organizations have been doing internationally
around cancer planning.
So, we have a desire to try and coordinate our efforts in providing technical assistance
for cancer planning, and you see what our vision is.
We have multiple priorities; we really want to advocate
that countries make cancer control a priority, that we use the networks
through this partnership to reach out to country decision-makers
to make cancer planning a priority.
We want to advocate, actually want to use the ICCPP networks to reach out --
this is what I just said -- encourage them to make cancer control priority,
jointly assist countries to develop and implement quality cancer control plans,
and then also try and coordinate our efforts.
And we have a new website that I can show -- I'll show at the end --
that provides access to a number of tools; the tools are tools from all
of the organizations focused on cancer control planning.
And we've done a comprehensive search of national cancer control plans,
so every country's plan that we've been able to find available is actually in one place.
So we have this Web portal, and we're seeking feedback right now; we're in the process
of doing usability testing for the website this week through August --
actually, the first week in August.
The UICC has a Global Education and Training Initiative.
IARC has a "Cancer Surveillance Fellowship and Training" course
that they're implementing that's directly 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 going to be bringing together countries
from the Middle East and North Africa.
The IAEA-PACT has missions that they've been conducting for years
that have been supporting cancer control planning.
And I'm quickly going to go to the [inaudible].
>> Brenda Edwards: Okay, sort of like double jeopardy; not only the slides,
but they wanted to hear your voice.
Well, let me say thank you very much for the opportunity to talk with you today.
The topic I've been assigned is "Cancer Registries in Low and Middle Income Countries."
As noted, I think those of you in this audience are the ones
who could actually write the major talking points.
One, not enough -- not enough data, and we need to do more.
So, in a way I'm going to be trying to paint a picture about some of the evidence,
some of the commentary on that particular observation.
The key messages, as you've heard from Sandy and from others say clearly,
population-based cancer registries are a 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 anyone ever ask you why do you need a registry,
you can look to this talking points.
And you've also seen data, I think, that talks about the global burden of disease.
Here we have a chart; in the pink, you'll see the actual number of cases that are estimated
for 2008; the green part is how that will increase for 2030.
It's the display by World Bank categories of the income levels of countries.
And you'll see that low middle income countries are where we're likely
to see the greatest and largest growth in 2030.
And so, that says that we really do have to focus on some of the areas
and improve our ability to track the occurrence of cancer.
So, a few references.
Just to sort of, again, what can I say that you don't already know
or that might help you take a resource away from here?
Certainly, everyone knows of Max Parkin, spent lots of years at the International Agency
for Research on Cancer, has spent lots -- is quite knowledgeable about cancer registries.
A few years ago, he wrote an article on the evolution of cancer registries;
I thought that actually might be one of the better summaries of what we know about them
and the different flavors in which they come.
The other one is the International Association of Cancer Registries has put a history together.
Again, I'm telling you this because I think another thing that's clear is you have
to work together, whether it's in your own country or within your own region.
But what we've also seen in the last few years is the Global Initiative
for Cancer Registry development in low and middle income countries called GICR.
It is hosted at IARC, and I'm going to talk a little bit more about that to explain sort
of where that program is growing -- going.
But before we get there, let me sort of get a bit more into some of the issues
about cancer registries, and the data that you collect, and how you might go
about assessing its accuracy or the comparability in comparing your data
over time or with other registries.
There are a couple of articles which I presented;
they were written a few years ago by Max Parkin and Freddie Bray.
But I do think that they represent perhaps one of the contemporary summaries of the things
that you might want to be striving for as you're looking,
assessing your own registries, the data in it.
The last one called "completeness" is really the completeness of the cases that you have
in a timely manner, and I assure you that that's the most difficult measure and is the one
that sometimes is most controversial,
but it actually is an important feature of your [inaudible].
I've put here a quote that IARC presented in the --
in 2011 that essentially goes on record saying that population-based cancer registries,
particularly in LMIC locations, is needed.
And they go on and talk about why it's such an important point.
Again, things we've said over and over again.
It also links into going into early detection screening programs.
But let me just say that sort of the IARC has had a longstanding interest in this area,
but there's been an enthusiasm and infusion of interest
in a program that's been put together; it's called the GCR.
Well, why did they -- someone you might ask us -- don't -- how do we know there's a --
there's more data needed in certain parts of the world?
And here's data from 2007, the cancer incidence in five continents,
that indicates that certainly in North America, Oceania, we have well over 80%
of the population routinely covered by high-quality data.
It's about a third in Europe; it is actually growing.
But where we would see the limited amounts 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 Cancer Registries 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 and publish is less than 20% of the world,
but in fact it actually is a smaller percentage 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 of a statement of the evidence.
What I put here is that in -- this year, we anticipate Volume 10 coming forth.
I thought it was coming out early part of the year;
I'm hoping it will be out by 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'm not an [inaudible]; but I hear its coming.
But I think as one looks at what are the problems that registries
in lower middle income countries face, here's the laundry list.
You could probably add your own.
It has to do with the infrastructure of your health care system, the knowledge that you have
or don't have with regard to your medical records.
It has to do with technical training of your staff.
And it also has to do with your administrative public health structure,
in which maybe the registry is not a priority, or it just doesn't compete
with other issues you have in your country.
So, the global initiative, as I said, has been talked about for a number of years.
It was formally launched in 2011.
Their goal and approach that they're taking is a partnership,
but it's to create a global network of regional hubs.
They're going to focus on support, training, and also an infrastructure that allows you
to do research later on, but also to work within your --
the networks of the cancer registries 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 you can use logos in public ways; so we're there,
but we don't have our logo there.
This was actually worked -- this -- there are many partners, one of which is the UICC,
but the first regional hub occurred in Tata Memorial Centre in Mumbai in 2011.
They actually have agreement signed for the second 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 part of the African Cancer Registry Network;
it actually exists, but it's of a slightly different character in the sense
that it's a -- I call it more the virtual hub.
And so they actually have three and one that is in development.
Here's a summary of some of the activities that go on within this hub structure.
This comes from some of the activities that are coming out of the Mumbai hub.
You'll see here that there's a fair amount of training that occurs there,
in the location of the hub; this was as well as in the region.
They also are setting up cooperative research agreements with other registries in the area,
and they also are supporting research.
Now, I think the research is a little bit more in the descriptive, epi arena,
or publishing data from these regions,
but that is a landmark activity that's not occurred before because of the lack of data.
So, I'm going to stop now by saying this is sort of what I know -- [coughing] excuse me --
about cancer registry development in low and middle income countries.
And we'll continue on with talking about -- 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 represent some cancer registry activities in China
as an example for this additional lecture.
I will talk about the development of cancer registry in China,
and what data a cancer registry collect in China.
And due to the cancer researchers and also will note that China is in a rapid transition;
it's a society with a rapid transition, so a lot of [inaudible] --
risk factors changes during the recent years, so further more interest
in doing cancer research in China.
So I will provide some information on how to access cancer data from China and then some --
introduce some data publications and the [inaudible], too.
As you know, the oldest cancer registry in the world is the Hamburg Cancer Registry in German,
which was established since 1929.
30 years after the first cancer registry established in China.
It's located in Lin County.
Originally in China, the cancer registry was initiated by scientific research funding.
I think maybe a lot of country, their cancer registry will beginning like this.
And the real meaning of population-based cancer registry was Shanghai Cancer Registry,
established in 1963.
Why I say it's a real meaning population-based cancer registry, it's because in Lin County
and only several sites of cancer -- several cancer sites be registered,
like stomach cancer, esophagus cancer, like this.
They don't register all kinds of cancer.
The Shanghai Cancer Registry it's a population based and register all sites of cancer.
Normally in China if you were to initiate a cancer registry
because they're usually not very good resources, you can use,
so in the past years mostly the cancer registry will initiate bio-scientific research
for this activity.
Mostly the cancer registrars are from hospitals.
And the cancer registry should be affiliated with some kind of institutes,
mostly cancer research institutes.
And after a period of development, more and more people realized the importance
of cancer registry so they are seeking continuous funding from the government.
Because if the funding is just for scientific research funding, when the research ends,
the support for cancer registry also ends.
So more and more cancer registry they are looking for that support
from the local government so it can make the registry continuous.
So like searching for the support from the government, there is a very important,
one thing is very important is that they need some regulations
or local policies to support cancer registry.
Because in China if you want, they'd reform the hospitals, you want the data that is collected
as a form of the government from the hospitals you should have a special
like public policies or regulations.
Otherwise, you cannot get the data or you just can't get the data not complete all collected
cannot go with the guidelines.
So regulation is quite an important issue for the local cancer registries.
So this slide showed cancer registries at the development in China in the recent 25 years.
You can see in the recent 10 years the cancer registries developed very quickly.
You can see in 2003, there is only 36 cancer registries all over China, but now there is 222.
So in the recent 10 years it developed very fast.
This is because there is a big funding from the central government.
Since 2003, the central government put quite a lot of money for the planning the development
for cancer registry all over China.
And this slide also showed cancer registries, the number of cancer registries
which data accepted by CR5 as [inaudible] mentioned.
The CR5 [inaudible] published CR5 every five years,
so the all you denied the CR5 Registries the 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, the number of cancer registries increased very fast.
But the data, the quantity of data developed or increased not as fast as the number.
And every year The National Cancer Center will publish annual report based
on the data collected by the cancer registries.
Not all the cancer registries data accepted by the National Annual Report.
In 2012 only 72 cancer registries accepted 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 and 31 in counties, urban and in the rural area
and totally covers 85 million population,
and accounts for like 60.4% of the whole Chinese population.
All those cancer registries, they are affiliated 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 system not quite like in U. S. We have a National CDC
and then there are prevention CDC and then the other prevention the CDC or county CDC.
So altogether there might be like 3000 CDCs in different levels in China,
so another CDC take the responsibility for data collecting
and data medical forecasting registry.
So I hope to collect the data in China, so I will take Shanghai
as an example because I know her best.
In Shanghai, cancer registry data work is based on 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 diagnose cancer, so they are the hospitals they are
like the general hospitals are a special hospital.
They have the ability to diagnose cancer.
There is a revelation in Shanghai that every hospital have the ability
to diagnose cancer, should report cancer cases.
So they will report cancer cases, both in -
they will report cancer cases in paper form or electronically.
And then those information will come into a local or district CDC,
and then after data input checking coding and the death certificate checking those procedures,
those data will come into this whole CDC who will do some case solidification
and the validation ordered and then we will publish the annual reporting committees
to CDC [inaudible].
And also in this system we not only collect data of cancer incidents
and the mortality we also collect data of cancer 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 those hospitals will follow the guideline
by like he posts address, their name and then which hospital did the diagnosis is,
the details of diagnosis, and the histological information.
And also we collect data of the state of diagnosis and the basis of diagnosis.
So why we also collect data of that state of diagnosis
because our cancer registry will [inaudible]
for cancer prevention program like 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 information system for cancer registry and the patient
to follow opt to support our cancer 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 death certificate system to do detailing
to get their death information, and also we will cooperate with a community services system
to get active follow up information
because in Shanghai the government added cancer patient community service
into the primary house service system.
So if the patient [inaudible] committed the house doctors will visit the patient regularly
at least once per year, provide information they need
and also their most symptoms can be treated in community health services.
So these services can get a lot of follow up information
to our cancer registry and data base.
And these are the sheets that the cancer patient home visit
when they do a home visit they collect then information and then we suggest
to use this kind of form to collect data.
So in those forms we can collect the patient's data on their height, their weight,
their history of smoke and their first symptom before diagnosis, and the date the diagnosis
or coming to the doctor, and also the different 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 disease classification, their terminology, the diagnosis
and the treatments and also the computer skills to we have
like a 16 person working local CDC level as cancer registrar.
So in this group can be well trained and also we did the quality control audit to make sure
that the data are complete and accurate.
In our Shanghai cancer registry we publish annual report every year
and also we publish a [inaudible] history report and also we submit data to CI5
and also we cooperated with like cancer research institutes and the other our research group
for the researchers our cancer prevention, the cancer [inaudible].
We like provide cases for case control studies and their cohort studies.
And for Shanghai Cancer Registry itself, we run a Shanghai Breast Cancer Cohort Study,
and it accumulated to 5000 breast cancer cases.
We also use the data from cancer registry to use the education, the health education
to design some fact sheets to serve for the public or the government.
This is one of the example, we tell people that there is 129 persons diagnosed
with cancer newly every day in Shanghai.
And every day there is 82% died of cancer and that there is 250,000 cancer survivors living
in Shanghai and though we provide those data to the public.
And if you are interested in the researchers are related to China, you can access the data
from cancer registries in China and also in Shanghai.
And this is the [inaudible] and they publish [inaudible] and Global
and Brenda has some introduction on this.
So in CI5 you can find several cancer registries data from China also
from Global [inaudible] you can find an estimation of cancer burden
and most mortality incidents and some prevalence here from China.
So you can use CI5 to find the registries data.
You can see this is a list of the data from Chinese registries of CI5,
and since the fourth edition, you can find the data from Hong Kong and Shanghai and then
after the fourth edition, every edition you 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 prevalence data from China.
And this is Chinese cancer registry report.
We have this national report since 2004, and this is our annual report.
So you can find a report the five years accumulate report,
and also you can find the histological report since like 1970's.
So those reports are published and I think that the annual report
since 2004 you can find both the English and the Chinese.
And beside this also you can get some 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 of course we use passive and the active follow up,
so and the clinicians all oncologists can present their suggestions or proposal
for data usage and after special procedures get approved so they can do their detailing
so they can look into our database the outcome of the patients they are follow up.
And also if there are other studies or projects proposed so they can come check with us
to get necessary procedure to get approved, so a lot of physicians
or oncologists will use to our data.
They will ask a lot of questions like why you can't provide the most recent data
so we always tell them because they retro a lot of data always delay
but you can use several years ago to estimate the current situation and also
in China you can find our National Statistics data not only
from those annual reports published by cancer center.
Also you can several national [inaudible] from cancer mortalities.
The data also very useful, and also physicians or oncologists will look for survival data
for the cases they follow up, so they can follow the special procedure to get those data.
Okay, that's all for my presentation.
Thank you.
[ Applause ]