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Invitation To Take Part In Patient Reported Outcome Measures Research Project

Invitation to take part in Patient Reported Outcome Measures research project

Calling all parents/carers of children under 12, children between the ages of 12-18 and also adults or carers of adults to participate in an ongoing study funded by Biogen

The University of Strathclyde in Glasgow is looking for people who have a diagnosis of Spinal Muscular Atrophy (5q SMA – Types 1,2 and 3) and their carers (parents/guardians, partners and unpaid carers) to take part in an ongoing study funded by Biogen. This is a research project to select the best tools to measure patient and carer reported outcome measures (PROMs) for people with 5q SMA. PROMs are a means of measuring treatment outcomes from a patient’s/carer’s perspective.

People diagnosed with 5q SMA and their parents/carers are key experts within these discussions, which is why the University has asked us to make contact with people who meet their criteria (see below) and may be interested in taking part in the study.

Where?

Expert discussions will be hosted within accessible buildings at the University of Strathclyde, Glasgow, Scotland.

When?

Dates will be finalised subject to availability of participants. Travel costs incurred due to participating in this study will be reimbursed.

Who can take part?               

If you are one of the following:

A parent / carer of a child, young person or adult diagnosed with 5q SMA (Types 1, 2 and 3) who is also:

  • Sufficiently proficient in English to be able to participate in data collection activities
  • Able to provide written informed consent
  • Aged 18 years and over

A young person aged 12 years or over or an adult diagnosed with 5q SMA (Types 1, 2 and 3) who is also:

  • Sufficiently proficient in English to be able to participate in data collection activities
  • Able to provide written informed consent (for those aged 12-15 years, this must also be granted by your parents/legal guardian)
  • If aged 12-15, deemed by your parent/legal guardian to be fit to travel and able to participate in data collection activities

Please note, if you are receiving artificial ventilation, you must only be being ventilated at night

I’m interested….

If you would like to take part, please get in touch with us by emailing the address below. So that we can send you the correct information sheet, please let us know if you are:

  • A parent/ guardian/ unpaid carer of a child who is under 12 years of age who has 5qSMA (Types 1, 2 and 3). Your child won’t take part but you would be welcome to as a proxy.
  • A parent/ guardian / unpaid carer of a child with 5q SMA (Types 1, 2 and 3) aged 12 – 15, whose child wants to take part. Your consent will also be required.
  • An adult with 5q SMA (Types 1, 2 and 3) who wants to take part.
  • A parent /guardian / partner/ unpaid carer of an adult with 5qSMA and you want to take part.

Email:

[email protected]

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