FAQ Participants Database and Friends List

Welcome to the FAQ for the Patrick Wild Centre (PWC) Friends List and Participants Database. You will find below answers to frequent questions. If you cannot find the information you are looking for regarding the PWC Friends List or the PWC Participants Database, please do email us at patrick.wild.centre@ed.ac.uk.

What is the difference between the PWC Friends List and the PWC Participants Database?

The PWC Friends List is for people interested in receiving general news and updates from the PWC. If you register as a PWC Friend, you will receive newsletters a few times a year that will focus on general updates from the PWC. Some newsletters may include some research participation opportunities, but they will mainly focus on general news and updates.

The PWC Participants Database is for people interested in taking part in PWC research projects as participants. If you register on the PWC Participants Database, you will receive emails with details about ongoing PWC studies looking for participants. When you register, you will be asked a couple of questions about yourself (i.e. gender, diagnosis, year of birth). Thanks to your answers to these questions, we will be able to send you emails about studies looking for people with exactly your profile. This means that you won’t be receiving dozens of emails that don’t even apply to you! Twice a year you will also receive a short digest gathering all the studies currently looking for participants, just in case you’ve missed an email or in case you would like to share the studies with people around you who might be interested.

Can I sign up to both the PWC Friends List and the PWC Participants Database?

Yes, you can! If you are interested in both the general updates from the PWC and the ongoing studies you can join, we invite you to register to both the PWC Friends List and the PWC Participants Database.

I am already on the PWC Friends List. Why should I join the PWC Participants Database?

As mentioned above, the PWC Friends List is mostly focusing on general updates, and only includes a few research participation opportunities. If you would like to be take part in future studies, you should register in the PWC Participants Database. That way, you will receive an email as soon as a PWC study is looking for people with your specific profile. Indeed, we won’t email you about absolutely all the ongoing studies, but only about those that match your profile and interest.

Who can join the PWC Participants Database?

Anyone interested in helping us with our research can join the PWC Participants Database! Of course, most of our studies involve people with autism or fragile X, but we also need the help of parents, carers, practitioners, educators, or anyone keen to help with research.

I am a professional (clinician, educator, policy maker, …) interested in autism / fragile X. Can I join the PWC Participants Database?

Yes, you can! We run all kinds of studies at the PWC, some of them aimed at better understanding what professionals working with people with autism / fragile X need. This means that sometimes, professionals like you are exactly the ones who can help us!

I am a parent/carer of someone with autism / fragile X. Can I join the PWC Participants Database?

Yes, you can! Many of our studies need people like you!

I don’t have any particular connection with autism / fragile X, but I’ve taken part in a PWC study before. Can I join the PWC Participants Database?

Yes, you can! Many of our studies also involve people with no known diagnosis who are simply interested in helping research.

Why have I received an email inviting me to join the PWC Participants Database?

We are in the process of building up the PWC Participants Database, a valuable tool which will improve the way PWC researchers involve interested people in their studies. You have taken part in one or more PWC study over the last 5 years, and when you did you indicated that you would like to hear about future studies. The researcher who ran the study you took part in has your contact details, but due to the GDPR (General Data Protection Regulation), this researcher is not allowed to transfer your contact details from their study records into the PWC Participants Database themselves. This means that PWC researchers won’t be able to get in touch with you anymore about ongoing studies that might interest you. As we are currently building the Database, we are now emailing everybody who expressed their interest in hearing about future studies to invite them to join the PWC Participants Database. Therefore, if you would like to hear about future study participation opportunities, you can complete the consent form provided in the email you have received. Once you have completed the consent form you will be added to the PWC Participants Database.

Why have I received the PWC Participants Database invitation email more than once?

As we are currently building the Database, we are contacting everybody who took part in a PWC study over the last few years and who indicated their interest in taking part in future studies, inviting them to join the PWC Participants Database. We are aware emails can get lost amongst other emails, and we too often forget to reply to emails. This is why, if you haven’t completed the consent form to join the Database within a couple of weeks after receiving the invitation email, we will email you again as a gentle reminder. We will stop emailing you reminders after 4 reminding emails, assuming you don’t wish to join the PWC Participants Database. Of course, if you don’t wish to join the Database, please do email us back and we will make sure not to email you the Participant Database invitation anymore.

What does the PWC do with the information I provide when I join the PWC Friends List or the PWC Participants Database?

Privacy notice: The information you provide when joining the PWC Friends List or the PWC Participants Database will be used by the PWC and the University of Edinburgh to communicate with you about news, updates (in the case of the PWC Friends List) or research opportunities (in the case of the PWC Participants Database). We will use the personal data you provided when registering only to contact you, or, in the case of the PWC Participants Database, to make sure the research opportunities we send you do match your profile and/or research interests. We will not share your personal data with people outside of the University of Edinburgh. We will hold your personal data until you choose to leave the PWC Friends List or the PWC Participants Database. You can find more information on the Privacy notice page and on the University of Edinburgh Privacy Statement page.

I don’t want to be part of the PWC Friends List or the PWC Participants Database anymore. How do I unsubscribe?

To leave the PWC Friends List, simply click on “Unsubscribe” at the end of the newsletter. This will take you to an automatic webpage asking you to confirm your decision to unsubscribe. Once you’ve confirmed your decision, you will automatically be removed from the PWC Friends List. Otherwise, if you don’t have a PWC newsletter at hand, you can also simply email us at patrick.wild.centre@ed.ac.uk (please write “UNSUBSCRIBE” in the subject of the email for faster processing, and indicate you wish to opt-out of the Friends List) and we will take you off the PWC Friends List manually.

To leave the Participants Database, simply email us at patrick.wild.centre@ed.ac.uk (please write “UNSUBSCRIBE” in the subject of the email for faster processing, and indicate you wish to opt-out of the Participants Database) and we will take you off the PWC Participants Database List manually.

Note that if you are registered in both the PWC Friends List and the PWC Participants Database, unsubscribing from one will not automatically unsubscribe you from the other. This allows you to unsubscribe from only one of the two if you wish. This way, you can be registered only for what you are interested in and change your mind if needed. If you wish to leave both the Friends List and the Participants Database, please send us an email at patrick.wild.centre@ed.ac.uk(please write “UNSUBSCRIBE” in the subject of the email for faster processing) explaining you wish to opt-out of both groups.

 

If you have further questions regarding the PWC Friends List or the PWC Participants Database, please do email us at patrick.wild.centre@ed.ac.uk.