Invitation to Join Study: Experiences of Living With, or Caring for Someone who has, SMA

21 May 2020

A healthcare market research company working for a research client and pharmaceutical company wants to understand patient and caregiver journeys and any treatment routines. There will be 3 - 4 separate 30 -minute online surveys over some 2 years. Participants will be paid £35 for each completed survey, with 10% donated to one of the company's registered charities. Registrations of interest close 29th May.

Who can take part

The invitation is to patients and caregivers of patients diagnosed with SMA (Types 1-3). The company is particularly looking for adult patients aged 18 years and above as well as parents / legal guardians, siblings (age 18+) or relatives of a  patient aged between 0-17 years.

About the Study

This is a longitudinal study where the aim is to track patients’ disease progression, the treatment experiences, any challenges that you face and how you manage the condition, along with their doctor. The questions are mainly around your personal journey with the condition from diagnosis to present. Liberating Research are ideally interested, where possible, to follow your journey once or twice a year over a 2-year period so we can get a better insight into the disease progression.

You can find out more and register your interest via the link below. You will then be contacted and will be asked a few screening questions to see if you are eligible for the study. If you pass the screener, you will be sent the required survey link to complete. Everyone is paid by Amazon voucher or bank transfer within 2 weeks of completing the survey.

For more information and to register your interest, go here.

About the Market Research Company and sponsors

Liberating Research is a market research company that is focused on healthcare research, primarily with patients. They were started by a Multiple Sclerosis patient to help other patients and carers get their opinions heard by the healthcare industry and to raise money for them and the charities that support them. All of their projects are sponsored by the healthcare and pharmaceutical sectors. On this occasion, they have been commissioned by a research client, ‘SurveyHealthcareGlobus’ who are in turn working on behalf of a pharmaceutical company. The identity of the pharmaceutical company can be revealed to respondents after the survey.

As this is a market research as opposed to a clinical research / trial, the sponsor was not required to obtain ethical approval for the study. However, the discussions have been designed to take this into consideration and ensure that participants data is kept confidential. Liberating Research are registered members of the BHBIA and ICO and take GDPR compliance and data protection extremely seriously.