Primary Progressive Multiple Sclerosis (PPMS) Study

What is the Aim of the Project?

While there are now a number of immunotherapy treatments available for people with Relapsing Remitting MS (RRMS), little progress has been made on treatments for people with Primary Progressive MS (PPMS). Understanding the causes of PPMS and what affects its progress over time can ultimately lead to treatments and prevention. There is very little evidence available on how risk factors operate differently in people with PPMS compared to people with a RRMS onset, but there are some clues to suggest that there are differences. For example, the latitudinal gradient is less strong in PPMS compared to relapsing remitting MS, and a similar number of females have PPMS compared to males, while far more women than men have the relapsing remitting type of MS.

This project has two phases:

Phase 1 – The aim is to clarify which factors might contribute to the onset of PPMS. We will compare possible factors among a large group of people with PPMS to a large group of people without MS.

Phase 2 – The aim is to learn about factors that might influence the progression of PPMS over several years. We will follow a large group of people with PPMS over time.

The research team has conducted similar studies in people with MS, including all types of MS, but the number of people with PPMS (1 in 10) was not enough to conduct a separate analyses on this group. In this project we plan to include 350 people with PPMS. 

What happens if I volunteer?

We will ask you about a range of lifestyle and other factors including for example your medical history, employment, where you have lived, and dietary intake. We will also ask you about your symptoms, quality of life and any disability caused by your MS.

In Phase 1, part of this information will be asked by two questionnaires that will be mailed to you and part of the information will be asked via a phone interview. The phone interview will take about 1 hour.

In Phase 2, we will ask for information by online questionnaires, or if you prefer via phone interview.

We will also ask you to visit a local pathology service for a blood sample. This will be used to look at markers that might be related to PPMS, including viral and vitamin D markers. Part of the blood will be used to extract DNA to examine which genetic markers might be associated with PPMS. If you have previously participated in a genetic study as part of the Australian and New Zealand Multiple Sclerosis Genetics Consortium (ANZgene), we will ask your permission to use the ANZgene data for our study.

Your blood sample and the DNA extracted from it will not, without your consent, be released for uses other than to identify genetic markers that may be associated with the onset and progression of MS. It is possible this study may incidentally reveal that you have a predisposition to a genetic disorder important to your future heath. This is an unlikely event, but if it did occur we will advise you and offer to arrange genetic counselling.  

Participation in this study is voluntary. It is completely up to you whether or not you participate in Phase 1 and Phase 2. If you decide not to participate, it will not affect the treatment you receive now or in the future. If you decide to participate, you may withdraw your consent at any time.

Privacy, Confidentiality and Disclosure of Information

All questionnaire and phone information sourced from you will be kept secure and confidential. Only people involved in the study will have access to the study data. Data will be stored on secure servers at the Menzies Institute for Medical Research. Personal information can only be disclosed with your permission or if required by law, and you have the right to access information collected and stored by the researchers about you. Participants will not be identified in any publication. All blood samples will be privacy-coded and laboratory staff conducting the blood tests will not know names of participants. Please refer to our Privacy Policy for more information.

Who is eligible to help with this MS research?

The project is currently calling for Australian residents with PPMS, aged between 18-59 years, as our group of people without MS are of that age. However, we will extend the age range to 60 years or older for the longitudinal study in the near future. Please register your interest for the study by providing your contact details and signing the Statement of Informed Consent. 

For more information regarding this study please refer to our PPMS Study Information Sheet

To join the PPMS Study read and sign the Statement of informed consent, and click on the Next button below for how to return it

Further information can be obtained at ppms.study@utas.edu.au or by calling +61 3 6226 4269 on Monday, Tuesday and Wednesdays (9am-3pm)