FAQ Contact Database

We used to also run the PWC Friends List, for people who only wanted to receive our newsletter. We have now merged the PWC Friends List and the PWC Contact Database. If you wish to hear about us, receive our newsletter, or receive our updates, you can now join the PWC Contact Database. If you are not interested in hearing about upcoming studies looking for participants, simply leave this option unticked when completing the registration form.

The PWC Friends List was only for people interested in receiving general news and updates from the PWC. Newsletters may include research participation opportunities, but they mainly focus on general news and updates.

The PWC Contact Database is an upgraded version of the PWC Friends List. The PWC Contact Database is for anyone interested in hearing about us, our upcoming studies looking for participants, our events, or our general updates. If you register on the PWC Contact Database, you will receive emails with details about the options you ticked when registering: upcoming studies, events, or general updates. You can select several options, based on your interests. 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, if you want to hear about new studies, 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.

As mentioned above, the PWC Friends List was mostly focusing on general updates, and only included a few research participation opportunities. If you would like to be hear about future studies or events, you should register in the PWC Contact Database. That way, you will receive emails for what interests you and what matches your personal profile.

Anyone interested in helping us with our research can join the PWC Contact 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.

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!

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

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

We are in the process of building up the PWC Contact 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 Contact 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 Contact 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 Contact Database.

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 Contact 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 Contact 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.

Privacy notice: The information you provide when joining the PWC Friends List or the PWC Contact 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 Contact Database). We will use the personal data you provided when registering only to contact you, or, in the case of the PWC Contact 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 Contact Database. You can find more information on the Privacy notice page and on the University of Edinburgh Privacy Statement page.

To update your communication preferences (for example if you want to start receiving invitations to events, or if you want to stop receiving invitations to recruiting studies), simply email us at at patrick.wild.centre@ed.ac.uk (please write “DATABASE” in the subject of the email for faster processing), and let us know about your communication preferences.

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 PWC Contact 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 Contact Database) and we will take you off the PWC Contact Database List manually.

Note that if you are registered in both the PWC Friends List and the PWC Contact 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 Contact 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.