Welcome to the Atlas of MS help page. I’m Rachel King and I manage the Atlas of MS project at the MS International Federation. I’m here to help answer any questions you may have about filling in the survey.

Below you can find some frequently asked questions and answers.

If your question isn’t answered below, please email atlas@msif.org and I’ll get back to you, and also post the question and answer below to help other people.

We are really grateful to everyone who is taking the time to contribute data to the Atlas of MS surveys – your efforts will help improve healthcare and support for everyone with MS around the world.

Click on the question below to go to the answer:

1. I can’t find my country in the drop-down list
2. I don’t know the answer to one (or more) of the questions
3. Can I estimate an answer to the question?
4. Can I ask other people to help me answer the survey?
5. Do you have the survey in any other languages?
6. I can’t use SurveyMonkey online – is there any other way I can fill in the survey?
7. I need more time to fill in the survey
8. I just filled in the EMSP’s Barometer survey, how is this different from the Atlas of MS?
9. How will my answers be used?
10. How will you keep my personal data safe?
11. When can I find out the results from the survey?

1. I can’t find my country in the drop-down list

The countries are listed in alphabetical order. We have used the World Bank list of countries. For countries that include ‘Democratic…’ in their name, please go to the letter of the main country name.  For example: Democratic People’s Republic of Korea, will be listed as Korea, Democratic People’s Republic of.

Please get in touch on atlas@msif.org.uk if you need any help.

2. I don’t know the answer to one (or more) of the questions

We appreciate that some of the questions may be difficult to answer or provide evidence for, and if you do not know the exact answer, we would like to know your best estimate. If you cannot provide an estimate then it is fine to leave that particular question blank. If you provide an estimate or personal opinion, please indicate this in the data source questions.

3. Can I estimate an answer to the question?

We recognise that not all of the information we are asking for is available or accessible in every country. However these are important questions and we would be very grateful if you feel you could collaborate with other experts in order to provide an estimate for your country. If you provide an estimate or personal opinion, please indicate this in the data source questions.

4. Can I ask other people to help me answer the survey?

Yes! In fact we encourage you to collaborate with other experts in the country to help ensure that the information provided is as accurate as possible and a reflection of the situation in the country. At the end of the questionnaire you can list anyone who has helped and wishes to be acknowledged in the report as a contributor, providing you have their permission to do so.

5. Do you have the survey in any other languages?

The online survey is only available in English, however we can provide versions of the questionnaire in French and Spanish in the form of Word documents – please get in touch with us by emailing atlas@msif.org.uk if you require these.

6. I can’t use SurveyMonkey online – is there any other way I can fill in the survey?

No problem if you can’t use the online survey, please insert your answers onto the Word or PDF version of the questionnaire provided and return the completed questionnaire to atlas@msif.org

7. I need more time to fill in the survey

We recognise that it can take time to consult with other experts and provide the data we have asked for. We have allowed a lengthy completion period to accommodate this, but if you feel you need more time, please email atlas@msif.org and we will try our best to accommodate any extension requests bearing in mind our analysis deadlines.

8. I just filled in the EMSP’s Barometer survey, how is this different from the Atlas of MS?

The Atlas of MS is a broad, open-access worldwide study of the epidemiology of MS, the global availability/accessibility of resources for people with MS, and for the third edition, insight into factors influencing quality of life, as heard directly from people with MS. The evidence the Atlas of MS collects can be used by multiple audiences – including researchers, policy-makers and MS organisations. Outputs comprise an interactive database which allows users to compare data between countries and/or regions, along with lay and scientific reports.

The MS Barometer is a comparative national survey of MS management across European countries, which is used as a benchmarking tool. Its main target is decision-makers. The MS Barometer intends to influence healthcare stakeholders at all levels, including MS patients; healthcare professionals; governmental institutions; insurers and other payers; politicians and financial supporters. The MS Barometer helps us to identify the best practices and the areas to improve for a better disease management in each country.

MSIF and the EMSP work closely together to ensure that the surveys complement each other, so as to reduce the burden on organisations asked to provide data. As both editions are due to be published in 2020, this will be especially important. The main focus of questions in each survey is different, and where the same data is needed, we will aim to coordinate the questions as far as possible. MSIF and EMSP will also share data where appropriate, to ensure that results from each effort can be viewed in a broader or more detailed context.

9. How will my answers be used?

Once you have submitted data we will conduct quality control checks and review the evidence you have provided. We may contact you for further explanation if we have any queries.

The Atlas is a key tool for organisations, health professionals and individuals when advocating for better access to treatment, care and support, and has been widely cited in the research literature.

We will produce a report showing the global total for the number of people with MS around the world and provide open source access to the key data.

10. How will you keep my personal data safe?

MSIF and our trusted partner McKing Consulting Corporation take our duty to protect your personal information seriously. The personal information we will collect through the Atlas of MS surveys will be your contact information. Any personal information you provide will be collected, transferred and/or stored in compliance with MSIF’s privacy policy https://www.msif.org/privacy-policy/.  We will retain this information for the duration of the Atlas project. The data that we collect from you may be transferred to, and stored at locations both inside or outside the European Economic Area (“EEA”) or Switzerland, including the USA.

11. When can I find out the results from the survey?

The plan is to release the first results from the survey in Autumn 2020 once we have had a chance to clean the data and conduct our analysis. If you supplied your email address during data collection, we will contact you once results of the Atlas of MS are available. At this point, the data will also be available on our website, along with a report and other tools to help you use the data. Further data/analyses will be added to our website as they become available.