Living with alpha mannosidosis or MPS VI? We need you!

MPS Commercial logo

Living with alpha mannosidosis or MPS VI? We need you!

MPS Commerical recruitment

We currently have 2 research studies that we need your help with.

Alpha-mannosidosis research study

We would like to get information on alpha mannosidosis, how it feels for you to live with the disease, and how this affects day-to-day quality of life for you and your family members. There are four questions that we would like your support to try and answer:

  • How the symptoms and signs of alpha mannosidosis change over time?
  • How alpha mannosidosis is diagnosed and looked after by the National Health Service (NHS)?
  • How having alpha mannosidosis affects your day to day quality of life and health in general?
  • How alpha mannosidosis affects any people that care for you, and your family members?

There are three parts to the survey:

  • Part One: A short printed questionnaire which you complete and send back to us
  • Part Two: An interview with a representative from MPS Commercial, during which you will complete a more detailed questionnaire. This can take place over the phone, in your home, or at another convenient location to you
  • Part Three: After Part Two, we may ask you to complete another face-to-face interview with a representative from MPS Commercial. This can take place over the phone, in your home, or at another convenient location to you. This can either be arranged at the same time as part two, or on a separate day.

If you complete Part Two and/or Part Three of the survey, we will compensate you with a voucher worth £30 in recognition of your time and valuable contribution to the survey.

If you are interested in taking part in this research, please email Jackie at MPS Commercial.

MPS VI research study

We are developing a questionnaire to review the needs of individuals with MPS VI.

The research project will:

  • Focus on an individual’s educational journey looking at their academic attainment, support needs and overall experiences.
  • Obtain informed consent to enable urinary GAG results to be collected to identify disease progression.

The research consists of a short printed questionnaire which you complete and send back to us (in the stamped addressed envelope provided) or can be completed over the phone with a representative from MPS Commercial.

If you complete the questionnaire, we will compensate you with a voucher worth £30 in recognition of your time and valuable contribution to the research.

If you are interested in taking part in this research, please email Jackie at MPS Commercial.