Expression of interest in involvement with cell and gene therapy research

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Calling individuals and parents/carers with experience of genetic conditions: are you interested in supporting research that will help gene therapy make progress?

Please note, this is not to recruit individuals into a gene or cell therapy trial.

We are looking for up to eight individuals to join an advisory group for a project that is accelerating the development of gene and cell therapies (the “ARDAT” project).

You might be someone with a rare genetic condition, or you might be a parent/carer of someone with a rare genetic condition. You do not need prior knowledge of gene and cell therapies – equally any knowledge you bring will be valued. We wish to include a diverse range of experiences so we are looking for people with and without direct experience of gene or cell therapies.

Gene and cell therapies hold much promise for rare genetic conditions. This international project brings together a team with great expertise – but it needs to hear from those who will ultimately receive these therapies. The advisory group will learn about the project and interact with the research team, discussing key topics such as views on holding patient data, and issues arising from the unique nature of the therapies.

The advisory group meetings will be remote (e.g. by Teams or zoom) – currently we are planning at least four meetings between December 2023 and May 2024. There will also be the option to visit a new gene and cell therapy laboratory in Sheffield in June 2024. Meetings will take place during office hours and you will be paid for your time and any out-of-pocket expenses.

Please apply below if you are interested in joining the advisory group. If we receive more applications than there are places we will select people based on the information provided in the form.

I would like to be considered for the advisory group for the ARDAT project

Yes

Please choose and tick one or more options from the statements below

I care for a child with a rare genetic condition

I have a rare genetic condition

Other (please specify):

This is required

What is the name of the condition?

This is required

Do you have existing knowledge of or experience with gene/cell therapy (e.g. you might have knowledge because of what you do for work, or you may have been part of a gene therapy trial or know someone who has)?

Please tell us why being involved in this kind of study is of interest to you?

Please describe what you hope to bring to the group, including any examples of when you have shared your experiences with others.

I am interested in taking part in a film and/or social media as part of this group (don’t worry if you don’t want to do this, we don’t need everyone to take part)

Yes

Unsure

I understand that taking part in the group will not lead to any direct benefit for me or my child

Yes

Name

Email

Sex

Female

Male

Prefer not to say

Age

17 or younger

18-29

30-39

40-49

50-59

60-69

70+

Prefer not to say

I consent to the information I have provided being held by Genetic Alliance UK for the duration of the ARDAT project and for 12 months beyond (to 30 June 2025) if I am selected for the advisory group.

Yes

I understand that if I am selected my contact details, and the information I have shared on this form, will be seen by representatives of the ARDAT project.

Yes

I would like to be considered for the advisory group for the ARDAT project

Please choose and tick one or more options from the statements below

Do you have existing knowledge of or experience with gene/cell therapy (e.g. you might have knowledge because of what you do for work, or you may have been part of a gene therapy trial or know someone who has)?

Please tell us why being involved in this kind of study is of interest to you?

Please describe what you hope to bring to the group, including any examples of when you have shared your experiences with others.

I am interested in taking part in a film and/or social media as part of this group (don’t worry if you don’t want to do this, we don’t need everyone to take part)

I understand that taking part in the group will not lead to any direct benefit for me or my child

Name

Email

My ethnicity is best described as

White

Mixed

Asian/Asian British

Black/African/Caribbean/Black British

Other Ethnic Group

Sex

Age

I consent to the information I have provided being held by Genetic Alliance UK for the duration of the ARDAT project and for 12 months beyond (to 30 June 2025) if I am selected for the advisory group.

I understand that if I am selected my contact details, and the information I have shared on this form, will be seen by representatives of the ARDAT project.

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I would like to be considered for the advisory group for the ARDAT project

Please choose and tick one or more options from the statements below

Do you have existing knowledge of or experience with gene/cell therapy (e.g. you might have knowledge because of what you do for work, or you may have been part of a gene therapy trial or know someone who has)?

Please tell us why being involved in this kind of study is of interest to you?

Please describe what you hope to bring to the group, including any examples of when you have shared your experiences with others.

I am interested in taking part in a film and/or social media as part of this group (don’t worry if you don’t want to do this, we don’t need everyone to take part)

I understand that taking part in the group will not lead to any direct benefit for me or my child

Name

Email

My ethnicity is best described as

White

Mixed

Asian/Asian British

Black/African/Caribbean/Black British

Other Ethnic Group

Sex

Age

I consent to the information I have provided being held by Genetic Alliance UK for the duration of the ARDAT project and for 12 months beyond (to 30 June 2025) if I am selected for the advisory group.

I understand that if I am selected my contact details, and the information I have shared on this form, will be seen by representatives of the ARDAT project.