ICCCPO Newsletter 2009 - No 1 |
|
Articles in the original newsletter that are now separate |
||
|
Title |
Author |
Link |
| Report from the 40th Congress of the International Society of Paediatric Oncology | Sarah Talbot-Williams | Go |
| The challenges of a shared-care system | Corry van den Hoed-Heerschop | Go |
| The importance of cancer registries | Gerlind Bode | Go |
| The care needs of adolescents with cancer | Luisa M. Massimo & G. Gaslini | Go |
I am sure everyone agrees that the death of Geoff Thaxter, our late Chair, is a great loss to ICCCPO and WCCF. Geoff’s dedication to families of children with cancer will always be remembered.
In
early October we had a highly successful ICCCPO conference in Berlin, in
conjunction with the SIOP annual congress. It was an excellent opportunity for
members and friends to share ideas and enjoy the atmosphere of the ICCCPO
family. I would like to thank everyone who contributed, including Professor
Guenther Henze, Gerlind Bode, Prudence Walker-Cuttance, Alexandra Browsdon,
Dorothee Schmid, Maren Boesel, and Chrissy Randall. Last but not least,
co-chairs Anders Wollmen and Anita Keinesberger.
ICCCPO
membership has grown again this year. We now have 118 members from 73 countries,
including new members Chile, Ethiopia, Ghana, Nepal, Syria, Tonga, Trinidad
& Tobago, and Zimbabwe. I would like to welcome them all and convey my
gratitude to those who keep working hard to nurture new groups and recruit new
members. This enables ICCCPO to give a strong voice to families and parent
organisations throughout the world.
While
the organisation is growing, we have kept our focus on our mission: to improve
access to the best possible treatment and care for children with cancer
everywhere in the world. These are our major goals for the coming year:
•
To foster a "we care" and "we share" culture
•
To strengthen our continental and regional work
•
To ensure continuity of ICCCPO
•
To build on our advocacy and external relationships
•
To keep developing the World Child Cancer Foundation (WCCF).
We
are collaborating with SIOP in a therapeutic alliance to speak about the needs
and inequality around the world. While we build a network of continental and
regional representatives, we look forward to working more closely with SIOP
Africa, Asia and Europe, and SLAOP.
The
development of WCCF will be essential for ICCCPO's further progress. WCCF will
start funding two projects shortly. Having some successful cases is vital for
further international public fundraising, but it will take time.
Together
we can make WCCF a strong organisation that makes a real difference to the
families of children with cancer in developing countries. If you would like to
make a donation to WCCF, please contact Jo Hopkins (jo.hopkins@worldccf.org),
Director of Fundraising, or Marianne Naafs-Wilstra (wccf@vokk.nl), Trustee of
WCCF & Secretariat of ICCCPO.
Lastly,
I would like to thank Julian Cutland, who has stepped down after 7 years serving
the Board. Julian has made an outstanding contribution to the organisation, and
his recent work on the Childhood Cancer Foundation Manual has been much
appreciated.
Benson
Pau, Chair
PS:
The ICCCPO Board would like to congratulate Poonam Bagai on receiving the Indira
Gandhi Priyadarshini Award 2008. This recognises her extraordinary and highly
appreciated work for the families of childhood cancer in India.
Children’s
Cancer Day in Croatia
We
want to inform you about activities that we arranged around Children’s Cancer
Day.
We
organized the first Croatian Meeting of Young People Cured of Cancer. About 50
young people from all over Croatia gathered in Split. It was beautiful. We
talked to members of our government about the problems young people may have
after their therapy. The media also attended the meeting so Croatians could hear
what the young people had to say. They were very happy and pleased to know that
someone cares about their problems.
“Sanus”
Split,
Croatia
New
websites for Eastern Europe
We’d
like to tell you about a new website at www.kids-cancer.info
which provides information about local and national parent groups and local
hospitals in the countries of former Yugoslavia. There are still some details to
be tidied up, but in the meantime the groups and hospitals will be delighted to
receive helpful comments and suggestions for improving the site.
In
Romania, the PAVEL team has also created a new website at www.asociatiapavel.ro
to celebrate the first year of the Centre for Resources and Services for
Children and Young People with Cancer and their Families. They were able to
create the website as a result of the project they won in the ‘My Child
Matters’ competition. The site is
in both Romanian and English, and they welcome contributions and useful articles
for and from cancer patients, families, doctors, nurses and psychologists.
Irina Ban, Olga Cridland and the PAVEL team
Donations
to LÖSEV are transformed into gold
The
children of Turkey triumph at the Oncology Olympics.
Our
sorrow after the Beijing Olympics was transformed into joy thanks to all the
first places the LÖSEV children achieved at the 2nd Oncology Olympics organized
by the Orimari Foundation in Warsaw, Poland.
We
felt so proud of the great successes of our children, who couldn’t suppress
their tears of excitement as they won 3 golds in the 3 disciplines in which they
competed.
This
brought great joy and happiness to our country. After their own triumph against
the disease, they now raised our flag to celebrate a triumph for our country.
550
children participated in the Olympics, which were organized by the Orimari
Foundation. The 8 countries taking part were Hungary, Russia, Poland, Germany,
Czech Republic, Slovakia, Ukraine and Turkey.
8
children from LÖSEV, aged between 13 and 17, took part in the Oncology
Olympics, and their success and determination brought joyful tears to everyone.
Ceren Gökdemýr took first place in swimming and Sadýk Ahmet Güneþ in
ping pong. Our soccer team, consisting of Kadir Kaya, Ozan Kurban, Halil
Ýbrahim Akgül, Sezer Dÿkmen, Uður Yürek and M. Akýn Aras, also won all 3
matches they played, and took the gold medal.
Before
returning to Turkey, the LÖSEV delegation visited Turkey’s Ambassador in
Warsaw, His Excellency Reþit Uman, at his residence.
Nazli
MUDUROGLU & Fulya YAVUZ International
Relations, Lösev
A
beautiful young girl made three very special wishes. She left them in a little
RED BOX for her young soldier Husband, and Mum & Dad, after she died on New
Years Day 1996. Donna Curtis had
just turned 20. Donna spent her last four years fighting cancer.
In
that time Donna saw the suffering of many terminally ill children, and vowed her
instructions would help them live a little more happily in the time they had
left.
As
her parents, Len & Babs Curtis, made it their love of labour fulfilling
their only daughter’s fairytale dream as a lasting tribute to her courage (if
truth be known, theirs) Len recalls "I was ready to jump off the
pier." My family, our businesses, it all suffered. It’s a wonder we
didn’t go under. Instead, we set
about making the dream of our late daughter a reality.
Keys
were handed over on our 35th Wedding Anniversary, and Donna’s
Birthday. A once derelict hotel,
has now been converted to a haven for any child to be over-whelmed by. Themed
rooms for absolute escapism, Winnie the Pooh’s Den, Cartoon World, Teddy Bears
World, and Seasiders Dream. A must see to believe Circus Room: complete with a
steam train encircling the ceiling, a wonderful Disney room.
Local
sponsorship allows the whole family to visit all major attractions, free of
charge.
A
light sensory room and sensory gardens are shadowed by possibly the most
poignant room a pretty wooden chapel-like quiet room. This is "where
children can be laid to rest, or parents can go to scream".
Our
honest opinion born by our experiences.
Donna’s
Dream House is full of light, laughter, fun and most importantly life.
Donna’s Dream House is about "living not dying".
A
heartbreaking fact out of over 500 families who have visited us nearly 400
children have sadly passed away.
Our
Donna knew the greatest task set us would help us come to terms with her death,
by helping others in a similar situation.
Noujoum
is a non-profit association based in Casablanca and Marrakech, Morocco, which is
dedicated to helping sick children and their families.
We
are very proud of being a new member of ICCCPO and becoming part of this major
and extraordinary solidarity network.
Our
daily commitment is to ease the management of childhood cancer by covering
medical costs and providing psychological help. We are deeply convinced that
sharing our respective experiences will help us achieve better results and bring
more support to children and their families.
Catherine
Sebti, Association
Noujoum
Cancer
Society Nepal (CSN) is very proud to be a member of ICCCPO. As a voluntary
charitable organisation, established to create awareness of cancer in Nepal, CSN
is still in its early stages. So, like a growing child, it needs love,
affection, guidance, suggestions and feedback from all of you.
Amongst
other activities, we are focusing our programme on childhood cancer, as today's
children are tomorrow's world. Cancer
is a global issue, and it touches us all directly or indirectly. Let’s share
our ideas and experiences.
What
CSN has been doing
Two
months ago, Cancer Society Nepal visited the Nepal government hospital for
childhood cancer, taking medicine and fruits.
The children were very happy to see us, and their parents talked frankly
and shared their feelings with us.
On
15 November 2008 we conducted a 3-hour childhood cancer awareness programme in a
poor village area in Kathmandu. Everyone worked voluntarily, including doctors,
nurses, and social workers. 75 children and their parents registered for the
programme.
We
are also planning to manage an accommodation hospital for childhood cancer
patients and their parents.
Shambhu
Prasad Kadariya, Executive
Director, Cancer Society Nepal
India
celebrates National Cancer Rose Day
National
Cancer Rose Day was originally conceived by Cancer Patients Aid Association [CPAA]
as a day dedicated to making cancer patients smile. It has been celebrated on 22
September for the last 14 years in major cities in India. The whole city takes
time out to visit cancer patients in different treatment centers, taking gifts,
toys, roses and personal messages telling them that they care.
5,000
cancer patients are greeted in 33 different treatment centers in Mumbai,
including hospitals, hospices, lodges, radiation centres and sanatoriums. All
these centers are decorated with floral arrangements in the early hours, and
this beautiful sight greets cancer patients when they wake up. Entertainment
programmes for patients are arranged throughout the day, including appropriate
film shows, orchestras, parties for young cancer patients, and hymns for the
terminally ill.
Celebrities
visit wards, giving immense happiness to patients who later tell us that this
was the best day of their lives.
Doctors
report that they have never seen patients so cheerful during their treatment.
Smiles light up their eyes and our hearts. There is no sight more
satisfying for us at CPAA than the smile of a young cancer patient. Rose Day
manages to make the patients and their relatives forget their agonies and battle
with cancer. As part of this year’s Rose Day celebrations, Anita Peter of CPAA
organised a Rose Day Fair for more than 500 cancer patients and their relatives
at our centre. The patients played games, got tattoos
and bangles, enjoyed snacks and goodies, and met some of their favourite
celebrities.
Shubha
Maudgal, Cancer
Patients Aid Association
Anand
Niketan, King
George V Memorial Infirmary
Happiness
lying behind mysteries …
mysteries
lying behind happiness.
Darkness
lying behind sunshine and sunshine lying behind darkness.
More
the mysteries … the happiness is more.
More
comes the darkness, more is the sunshine enclosed in it and more challenging the
life becomes … more desirable to live.
But
a ‘desire’, doesn’t it sound materialistic?
The
lines above, don’t they sound a bit materialistic?
Materialistic?
… then what’s real my friend???
These
subliming walls and those high, melting waterfalls?
The
fragrance in the air and laws through Newton’s flare?
Beauty
in those wet, light grey eyes and the tick-ticking glare …
Moments,
hours, days and light years,
Sword-like
cries and momentous cheers …
All
so puzzled up, messed up, coiled with uncertainties of time,
With
muddy sun-glasses of ambitions a deep dive into the hollow brine.
So
confused I am, who am I and what for I am?
But
where to look for the answers?
Answers!,
so unpredictable.
Queries,
questions, goals and desires, all so irresistible.
But
who cares for the answers, and the questions that gave them birth.
Unknown
challenges of life and the life afar, a deep sigh … all lost into the last
mirth.
But
again who cares for the last and the endless ends.
So
challenging, enjoyable is every moment, life’s criss-crossed lanes, its florid
tiles with unknown bends.
Yeah!
This is the pepper of my meal.
Amazing
becomes every next step, every new leap with this ageless zeal.
Shobhit
Kaushal —
Mumbai, India
Interactive
CDs for young people with cancer
The
Degge Group Ltd of Arlington, Virginia, has developed two award-winning
educational interactive CD-ROMs with funding from the National Cancer Institute
at NIH. The first one, Kidz with Leukemia: A Space Adventure (2000), is for 4-11
year olds with leukaemia (no reading required for the youngest age group), and
the second, Conquering Cancer Network: Empowering Teens with Tools, Info, and
Inspiring Stories (aka CCN) (2006), is for adolescents with solid tumors.
These
CD-ROMs are designed to help the child and their family. The child with cancer
learns that s/he is not alone in the fight against cancer by ‘watching’
other children like themselves talk about their experiences with cancer, e.g.,
hair loss. The whole family is helped to understand the illness.
Healthcare
providers are introduced, coping suggestions are offered, side effects and
medications are explained, ‘videos’ of tests using live patients show what
children with cancer have to go through and why they are necessary. All this
information helps the patient lead a better quality of life, encourages
compliance with the treatment, and thus increases patients’ chances to get
better.
The
evaluation of the CD-ROMs showed that children with cancer who used our CD-ROMs
rather than standard printed material were significantly more likely to feel in
control of their health from pre- to post-intervention measurement. Evaluation
of the Kidz with Leukemia CD-ROM showed that children who used it were more
satisfied than those with a leukaemia book, with the most positive response
reported among 4-6 year-olds.
Children
used the leukaemia book less often and for shorter periods than those using the
CD-ROM.
Voiceovers,
music, videos, games, and animations make these CD-ROMs a very interactive
medium for learning. The both include a list of resources for the patient and
his/her family. The leukaemia CD-ROM contains a drug database, while CCN has
drug fact sheets on various chemotherapy drugs. CCN also has a section on
‘Late Effects’, which helps the adolescent and the family understand the
potential problems s/he could face as a result of cancer treatment, and ways in
which s/he can try to avoid some of them or deal with them.
Healthcare
providers also like using these CD-ROMs as teaching tools for both patients and
their residents / fellows in Haematology-Oncology training. Many would like to
give these CDs free of cost to their cancer patients, so they can learn about
their illness and treatment at their own pace, in the privacy of their own
homes.
Both
these multimedia CD-ROMs have been very well-received. So far, Degge has sold
843 copies in 16 countries and distributed more than 470 copies worldwide.
However, although we receive frequent enquiries about the CD-ROMs, many people
hesitate to buy them because of the cost.
Degge’s
goal has always been to get sponsorship, so that every child and adolescent with
cancer can get a copy of these educational products, regardless of cost. We want
to distribute these CDs directly to children and adolescents who need them, or
via not-for-profit childhood cancer organizations, cancer camps, and
children’s cancer clinics. Each CD costs $29.95 for families with cancer, or
$39.95 for others. On the occasion of its 20th anniversary, Degge is
offering an extra 20% discount on these CDs throughout 2008.
You
can find out more about the CD-ROMs at www.kidzwithleukemia.com
and www.conqueringcancer.net.
For
questions or offers of sponsorship, please call (703) 276-0067 ext 107 or send
an e-mail to info@kidzwithleukemia.com
or help@conqueringcancer.net.
Sharmila
Kamani, The
Degge Group Ltd, Arlington, VA
Scholarships
for cancer survivors in Alberta, Canada
Twenty-six
cancer survivors received a surprise when KCCFA announced the first recipients
of the KCCFA Derek Wandzura Memorial Scholarship. They discovered that everyone
who applied had been granted a $1,000 scholarship for studies this fall.
Initially
just a handful of young people were to be chosen this year because the fund only
had $5,000 to award. But a $21,000 donation from Brahma Compression Ltd. brought
the amount to $26,000, allowing all applicants to walk away with a scholarship.
"The
calibre of the applicants was so high and their stories so inspiring that we
decided to stretch the rules - and the fund - in honour of the inaugural
year," said Brahma president Don Schafer, who chairs the scholarship
committee.
The
Kids Cancer Care Foundation of Alberta established the award last winter in
honour of Derek Wandzura, the late son of Christine Wandzura, founder and CEO of
KCCFA. Derek passed away from brain cancer at age nine: "I wasn’t able to
see Derek reach the age of these kids here today," said Christine at the
awards ceremony, "And I won’t be able to see him become a police officer
like he wanted but I can see these kids reach their dreams — and that inspires
me."
The
scholarship is designed to help financially strapped families and level the
playing field for young people suffering from the late effects of cancer and its
treatments.
These
may include blindness, deafness, unsteady gait, loss of limbs, small stature,
learning difficulties, heart impairments, depression and a host of
life-threatening diseases. Young people undergoing cancer treatment also miss
more school than their peers and may fall behind academically.
The
$100,000 endowed fund is managed by The Calgary Foundation and its annual
disbursement is $5,000, which is 5% of the total fund. KCCFA hopes to increase
that amount in coming years, so the fund remains open to donations.
"We
hope to grow the fund substantially next year, so we can give healthy sums to
more young people," said Don Shafer.
To
donate to the KCCFA Derek Wandzura Memorial Scholarship fund, visit www.kidscancercare.ab.ca.
Gail
Corbett,
Manager of Communications, Kids Cancer Care Foundation of Alberta
Opened
online November 19th 2008.
Care
to Wear® headwear is made for children who suffer from hair loss due to
chemotherapy or alopecia. We only use 100% natural fabrics. The construction of
Care to Wear® caps and bandanas is specially made:
This
means that:
•
The scalp can breathe
•
Care to Wear® caps and bandanas always stay in place
•
It covers the back of the head entirely and hides the hair loss
•
It gives protection against the harmful rays of the sun
Although
special, Care to Wear® headwear resembles “normal” headwear in its design.
Children do not want to stand out because they are different! So on the outside
Care to Wear® looks like something their friends would wear, too.
We
are opening our web shop, by request of parents. We are taking a step towards
making it much easier for the children and their parents to buy Care to Wear®.
www.caretowear.dk
International
Childhood Cancer Survivor Network (ICCSN)
Contact
Report
I
hope those of you who could make the conference in Berlin found the programme
beneficial and were able to take back new information and ideas to organisations
in your own countries. I would like to extend my thanks to Dorothee Schmid,
Maren Bösel and Christine Randall, for all their help in organising the
survivor programme this year, and especially to Alexandra Brownsdon for chairing
the survivor programme
in Berlin.
In
2009 the conference will be held in Sao Polo Brazil, and we would love to hear
from you if you think you can help plan the survivor programme. The survivor
programme each year is intended for childhood cancer survivors and siblings of
survivors aged 18 years or over who currently play a roll in survivorship
activities in their own country, or who would like to establish such activities.
If you would like more information about the survivor programme, please email
me.
We
are currently looking to strengthen the survivor committee, and I would be
delighted to hear from anyone who thinks they have some skills that could help
us out. We are looking for anyone (not just survivors or their siblings) with
skills that could help our efforts to support the establishment and further
development of the International Childhood Cancer Survivor Network, as well as
the network and development of survivor groups around the world.
If
we get a good idea of what skills people have, we can use each individual’s
skills to strengthen the committee and help us support survivor groups or those
wishing to establish survivor groups.
If
we don’t have contact with your survivor group, or you would like to start a
survivor group, please contact me and we can share some information.
Prudence
Walker-Cuttance
Chairperson,
International Childhood Cancer Survivor Network
One
topic discussed at the survivor meetings in Oslo and Vancouver was “Building
up a Survivor Group”. I was a member of the Survivor Group in Heidelberg
(Germany) for quite some time, and after I had heard so much about assembling a
Survivor Group, I thought it would be nice having one in Mainz (Germany), the
town were I was treated.
So
I talked to the social pedagogue (Mr. Leimig) from the Parents Organisation in
Mainz. He also thought it was a good idea to have a Survivor Group in Mainz.
After
we had sorted out the most important points, we held our first meeting in June
2006.
If
everything goes well we meet once a month. We do lots of different things
together, and there are always between five and fifteen teenagers at each
meeting. Our group is not just for
cancer survivors, but also for siblings and bereaved siblings.
“Through
the group you have the chance to meet friends (from the ward) outside the
clinic, and stay in contact.” That’s what a girl from our group said and I
think that’s the point.
Christine
Randall
Acute
lymphoblastic leukaemia protocols in the Netherlands
These
are links to helpful articles about the better outcome of paediatric protocols
compared with adult protocols.
1)
Leukaemia article: Significant difference in outcome for adolescents with acute
lymphoblastic leukaemia treated on paediatric vs adult protocols in the
Netherlands. http://www.nature.com/leu/journal/v18/n12/full/2403538a.html
2)
Paediatric Blood and Cancer: http://www3.interscience.wiley.com/cgi-bin/jhome/106561790
3)
British Journal of Haematology: http://www3.interscience.wiley.com/cgi-bin/jhome/118517380
Dr
Patty E M Brouwer ICCCPO
Secretariat, The Netherlands
Setting
up the new European Paediatric Hodgkin Network
The
EU-funded Paediatric Hodgkin Network starts work in September.
Because
of the limited experience with Paediatric Hodgkin's lymphoma in local hospitals,
experts from various EU countries decided to create a reference network to fight
this rare childhood cancer. Now, young patients with Hodgkin's lymphoma are
being treated according to a common protocol in 13 European countries. The
primary objectives of this Deutsche Krebshilfe e.V. (German Cancer Aid)-funded
EuroNet-PHLC1 study are high cure rates and significant reduction of late
effects, with the least necessary treatment toxicity.
One
of the main aims of the project is the creation of a reference board made up of
interdisciplinary experts in the fields of oncology, radiology, nuclear medicine
and radiotherapy. The attending oncologists submit patients' data, including all
original imaging data, to the reference board based in Halle and Leipzig,
Germany. The experts assess the tumour stage and treatment sponse of every
patient, and send the results to the local oncologists, thus providing a second
opinion on the treatment decision.
This
time-critical process requires modern communication techniques, so we are
setting up a European Image Data Network to connect treatment facilities in
various European countries. Along with the technical improvements, the EU
funding within the framework of the Public Health Programme will allow for a
Europe-wide high-quality treatment of all affected young patients, independent
of their social or geographical origin.
The
project’s main partner is the University of Leipzig. Responsible for the
project is Professor Dr Regine Kluge, Deputy Director of the Department of
Nuclear Medicine, University Hospital, Leipzig.
Magdalena
Kaminska,
Project Co-ordinator, European Paediatric Hodgkin Network
ICPCN
launches a Charter of Rights
The
International Children’s Palliative Care Network (ICPCN) has published a
Charter of Rights for children with life-limiting or life threatening
conditions, which they wish to see accepted and ratified by governments and
health departments around the world.
According
to the United Nations Convention on the rights of the child, every child and
young person has a right the highest attainable standard of health, as well as
the right to be protected against abuse, neglect and all forms of ill-treatment.
Governments are required to do everything in their power to ensure that children
enjoy full and holistic development.
In
the spirit of the UN Convention, the ICPCN Charter sets out the international
standard of support that is the right of all children living with life-limiting
and life-threatening illnesses, and their families.
The
Charter calls for all such children to receive appropriate palliative care —
care whose main purpose is to relieve suffering, whether physical, spiritual or
emotional, and to promote quality of life.
"A
child who dies without receiving adequate pain control and symptom management
has suffered abuse - and an untreated HIV positive child is suffering
neglect," according to Joan Marston, chair of the ICPCN.
Palliative
care encompasses the entire family. It should begin at the time of diagnosis and
continue alongside any curative treatment aimed at the disease.
If
curative treatment fails, palliative care should be continued until the child
dies and then with the bereaved family for as long as they need.
The
Charter calls for palliative care to be provided within the child’s home or a
child-friendly environment. It should be offered by professionals and caregivers
trained in palliative care specific to the needs of children.
"Our
fervent wish is that this Charter will prove to be a useful instrument for all
those who campaign for improved hospice and palliative care services for
children around the world," states Marston.
The
ICPCN Charter has been translated into 17 different African and European
languages which can be downloaded from the website at www.icpcn.org.uk
What
is the ICPCN?
The
International Children’s Palliative Care Network (ICPCN) was formed in 2005 to
achieve the best quality of life and care for children and young people with
life-limiting illnesses, and their families and carers, through networking,
advocacy, information sharing, education and research.
It
is coordinated from within South Africa and chaired by Joan Marston, who works
for the Hospice Palliative Care Association of South Africa as the Paediatric
Palliative Care Manager. •
For
more information about this article please contact:
Sue
Boucher, International
Information Officer for ICPCN
Tel:
+27 (0)31 765 7295. Cell: +27 (0) 828974420.
Email: sue@icpcn.co.za
Joan
Marston, ICPCN
Chair
Tel:
+27 (0)822 964 367. Email: joan@hpca.co.za
Introducing
the new SIOP Europe website
We
are really glad to inform you that we have now launched the new SIOP Europe (SIOPE)
website and it is ready to receive visitors at: www.siope.eu
After
several months of careful construction, essential input and guidance from
experts within our SIOPE network, the website has been especially structured to
provide easy access to a wide range of news, information and services.
Key
features on the SIOPE website include:
Public
domain
•
General
information on the SIOPE office and its activities
•
The
latest news on paediatric oncology, training courses and job opportunities in
research groups / institutions
•
Useful
links to childhood-cancer related public institutions, research consortia and
NGOs.
Subscribers
only
•
Access
to the latest SIOPE internal news, such as meeting minutes from different
working groups
•
Contact
details of professionals engaged in the field of paediatric oncology and
clinical trials across Europe
•
Summaries
reporting on current trials throughout Europe
•
The
latest information on SIOPE’s advocacy at the European level.
Initially,
the SIOPE website will publish most of its information within the Public Domain.
After a trial period of a few months, certain sections will then become password
protected and will only be accessible for subscribers, who will be issued with
personal login/password details.
Please
note that we have extensively modified the previous contents, and the
information on the site has now been improved, updated and better structured
Please take a tour of our new SIOPE website, particularly the ‘Parents and
Patients’ section. If you have any questions or comments please contact the
SIOPE office at: jocelyne.wang@ecco-org.eu.
We
look forward to receiving your feedback, ideas and comments.
We
are also delighted to inform you that the SIOPE September 08 Newsletter is now
available on the SIOPE website.
Kathy
Pritchard-Jones,
SIOPE President
Guidelines
for the pharmaceutical development of medicines for paediatric use
The
European Medicines Agency (EMEA) has published a concept paper on the
‘Development of guidelines on the pharmaceutical development of medicines for
paediatric use’ (EMEA/138931/2008).
The
document is available here:
http://www.emea.europa.eu/pdfs/human/qwp/13893108en.pdf
http://www.emea.europa.eu/pdfs/human/biosimilar/17073408en.pdf
http://www.emea.europa.eu/pdfs/human/ewp/111998enrev1.pdf
http://www.emea.europa.eu/pdfs/human/ewp/914708en.pdf
http://www.emea.europa.eu/pdfs/human/vwp/471703en.pdf
http://www.emea.europa.eu/pdfs/human/ewp/1437708en.pdf
http://www.emea.europa.eu/pdfs/human/biosimilar/11826407en.pdf
This
concept paper is the first step towards developing scientific and harmonised
guidelines for responsibly developing a medicinal product for use in different
subsets of the paediatric population.
Anders
Blædel Lassen. European
Medicines Agency (EMEA). Medical
Information Sector