• Latest news
  • Introduction
  • Objectives
  • Resonance – mapping platform
  • Sanofi Espoir Foundation – funder
  • More information
  • SIOP Global Mapping Steering Committee
  • Frequently asked questions

Latest News

The first phase of the SIOP Global Mapping programme is complete. We have data covering most of Africa. One paper has been published using this data:

The SIOP Global Mapping Programme and data is now held and managed on Resonance’s secure site – https://resonancehealth.org/.

Updated: December 2020

Introduction

The SIOP Global Mapping Programme has the potential to benefit everyone, especially the children and adolescents for whom we care.

The main objective of this effort is to collect information on the current landscape of paediatric oncology services around the world, and the resources available in each individual country.

We are reaching out to leadership in hospitals and institutions around the world. If you receive a request to register on Resonance and enter data for your hospital please do so. Answering questions regarding childhood cancer services in your facility should take less than 10 minutes of your time.

SIOP Global Mapping Programme is now in its second phase. Data has been collected for Africa, and is currently being collected in Latin America and Asia.

See the Objectives and Frequently Asked Questions (FAQs) below for more information about the global mapping programme.

Objectives

  • Create a baseline of the current paediatric oncology resources available in each country. This will help SIOP and international, regional and national stakeholders in their respective childhood cancer advocacy.
  • Provide and maintain accurate information about every hospital or institution that treats children/adolescents with cancer. This is of benefit to locally, regionally, and nationally and for SIOP members, e.g., for patient referrals or research outreach.
  • Provide a network of resources to help develop collaborations between institutions and networks.
  • Maintain on online map showing where each hospital or institution that treats children/adolescents with cancer is located. Having your hospital or medical centre displayed on the map is optional.

We will publish the results and share the findings with other interested stakeholders at SIOP. We will not identify participants by name or by hospital/institution. We will only report data by country.

Resonance – mapping platform

The SIOP Global Mapping Programme and data is now being held and managed on Resonance’s secure site – https://resonancehealth.org/.

Sanofi Espoir Foundation – funder

The SIOP Global Mapping Programme is being supported by Sanofi Espoir Foundation – https://www.fondation-sanofi-espoir.com/.

More information

Please see the FAQs below for more information or email info@siop-online.org or support@resonancehealth.org.

SIOP Global Mapping Steering Committee

Jennifer Geel, MD (South Africa), SIOP Member

Neil Ranasinghe (UK), SIOP Member

Julia Challinor, RN, PhD (USA), SIOP Secretary General

Eric Bouffet, MD (Canada), SIOP Past President

Kathy Pritchard-Jones (UK), SIOP President

Scott Howard, MD (USA), CEO Resonance Health and SIOP Member

Frequently asked questions (FAQs)

1. Who can enter data for the Global Mapping Programme?

We are inviting key hospital personnel and subject matter experts (e.g., directors of paediatric oncology units or medical directors) to enter data or to designate appropriate content experts to contribute. These are clinicians with knowledge of all services being provided to children/adolescents with cancer in your centre.

2. Can SIOP provide assistance to my hospital?

The initial aim is just to map services provided in each country. Then we will determine whether SIOP as an organisation can provide assistance in terms of lobbying or advocacy. Unfortunately, SIOP does not provide financial support to hospitals or institutions.

You are encouraged to become a member of SIOP to join advocacy efforts, learn more about resources that may help you and network. SIOP membership rates have been significantly reduced for people in low- or lower- middle-income countries. Find out more about SIOP Membership – https://siop-online.org/membership/.

3. What type of data are you looking for?

Information on access to facilities, medication, and support services (e.g., pathology, psychosocial, etc.) at your hospital or institution. For example, if you have an MRI scanner at your hospital or institution, but it is never available, or too expensive for paediatric oncology patients, then please answer NO.

4. Where can I find more information about the programme?

If you still have a question, please email info@siop-online.org.

5. How can I get involved?

Please email info@siop-online.org.

6. Where will the data be published?

Reports will be made available on the following websites:

SIOP – https://siop-online.org/

Cancer POINTE – https://cancerpointe.com

Resonance – https://resonancehealth.org/

7. Who are the people behind this?

This data is being collected by and managed by SIOP and cancerPOINTE members.

  • SIOP is the only global multidisciplinary society entirely devoted to paediatric and adolescent cancer. The society has over 2,500 members worldwide including doctors, nurses, other health-care professionals, scientists and researchers.
  • Cancer POINTE is the online tool of the Education and Training Working Group of SIOP Paediatric Oncology Developing Countries (PODC).

8. How will this data be used?

We intend to establish the levels of services for children/adolescents with cancer to determine where there are gaps or inequities. Having a clearer picture will make it easier for funders to invest in improving services. We intend to use this data to lobby at a high level (e.g. with the World Health Organisation and government ministries) for increased attention to childhood and adolescent cancer care. We would like to increase SIOP membership in low- and middle-income countries so priorities in these regions are highlighted in SIOP activities.

9. Will this data benefit me?

We hope to provide adapted treatment protocols for use in low- and middle-income countries according to the facilities and resources at your hospital. This should be of direct help to you.

10. How can I use this data?

You may find it useful to network or refer patients outside your centre/country. If you have a patient requiring care unavailable in your country, you may find resources and contacts through SIOP, e.g., for stem cell transplant, targeted therapy, or clinical trials.

Comparison of services in your region may strengthen your argument when lobbying for more comprehensive services in your region or centre. You may also be able to locate potential collaborators for research that is relevant to your region.

11. Where is the map of all hospitals and what does it show?

The map of all hospitals is currently being created not currently available. In the future, it will be displayed on:

SIOP – https://siop-online.org/

Cancer POINTE – https://cancerpointe.com

Resonance – https://resonancehealth.org/

The online map will show the following details:

  • Name of hospital
  • Address
  • Website (if there is one)
  • Contact details (optional)

12. What does SIOP do?

SIOP’s objectives and goals:

  • To advocate globally for children with cancer and their families
  • To focus attention on future research needs in paediatric oncology
  • To explore possible partnerships with other stakeholders sharing the same mission and vision, and elaborating a common agenda
  • To increase the SIOP membership to have a vibrant society which acts on needs and ideas of its members

https://siop-online.org/

13. Should I forward the link to the survey to my colleagues in other hospitals?

No, we are contacting people directly.

14. Has any data been published yet?

Yes, you can see some initial findings in this published paper:

This YouTube video highlights some of our findings from Africa:

The latest information about the SIOP Global Mapping Programme is available here: https://siop-online.org/globalmapping/

15. Can I provide more data than the questions asked on Resonance?

Yes, you will be able to provide more information when the maps are available.

16. What languages will the data be available in?

We will be publishing the data in English.

17. Will this programme include adult cancers?

No, this programme only covers childhood cancers.

18. Will this programme include other childhood diseases or just cancer?

No, this programme will only cover childhood cancers.

19. What is SIOP’s relationship with the World Health Organisation (WHO) and how is that relevant for the programme?

In January 2018, SIOP was formally accepted into official relations status with WHO as a non-state actor. One objective of SIOP’s 3-year WHO work plan is to explore health workforce capacity for childhood cancer. Data from this programme will be used by WHO and other global stakeholders to better understand access to childhood cancer care.

https://siop-online.org/who-global-initiative-for-childhood-cancer/

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