A new survey, developed in partnership with the TSA, is investigating the experiences of living with facial angiofibromas (FA) and TSC. This research, conducted by a research agency on behalf of a pharmaceutical company, could uncover vital information on the needs of people who live with FAs and TSC.

For the research to be successful, we need YOU to get involved.

The goal of this important project is to better understand what it is like to live with FAs on a daily basis. With this knowledge, it is hoped that TSC professionals can help community members to treat and manage the impact of FAs more effectively.

To get involved, please click here to fill out the survey. It takes around 15 minutes to complete, so grab a cuppa and help improve lives in the TSC community.

The study results will be used to help healthcare decision-makers understand the impact of FAs on people’s lives. It is hoped that the study results will be presented at academic conferences and published in medical journals. The results will also be shared with patient organisations who support supporting the TSC community, such as the TSA.

Who can take part?

You (or the person you care for) must be diagnosed as living with TSC and FAs. Caregivers and guardians can complete the survey on the behalf of another person. If the person living with TSC and FAs is aged 6 – 15 years old, they must get a caregiver or guardian to complete it on their behalf. Children aged under 6 years are unable to take part.

Is the survey anonymous?

Your responses will remain anonymous and will be grouped with the responses from other people. Your individual feedback will not be shared with any of your healthcare professionals, and it will not alter your care in any way.

This survey is being conducted by a market research company on behalf of a pharmaceutical company.

More information about the survey can be found below (courtesy of Adelphi Real World).

Adelphi Real World are seeking people (children and/or adults) with facial angiofibromas (FAs) in TSC to take part in a study – please click here to take part.

Who are we looking for?

We are looking for people with facial angiofibromas and TSC to take part in an online survey. This research is designed to help understand the impact of FAs in TSC on the person/individual living with the condition and their family members.

It will be mandatory for children aged 6 to 15 years old to have the survey completed on their behalf by a caregiver/parent/legal guardian. Those aged 16 and older will be offered the opportunity to complete the survey by themselves or with support from their caregiver/parent/legal guardian. The caregiver/parent/legal guardian can assist the person with FAs during survey completion OR complete the survey on their behalf.

What would we ask you to do?

The survey will take approximately 15 minutes to complete.

Who is conducting the study?

This study is being conducted by an independent research consultancy, Adelphi Real World, based in Macclesfield, the United Kingdom. The pharmaceutical company sponsoring the study will be revealed on the last page of the survey to avoid survey responses being influenced by the study sponsor’s identity.

What would we do with your data?

Data from all study participants will be combined and analysed together. Your participation is anonymous; we will not ask you for identifying personal information in the survey.

The aggregate study results will be used to help healthcare decision-makers (such as NICE in the UK) understand the impact of FA’s in TSC on people’s lives. We anticipate that the aggregated study results will be presented at academic conferences and published in peer-reviewed medical journals. We also plan to share these results with patient organisations supporting the TSC community, such as the TSA.

Are you interested in taking part in the study?

We would be very grateful for your help with this important research by completing the online survey via this link.