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Quebec 1000 families (Q1K) is an initiative that will compile data on autism spectrum disorder (ASD) and related neurodevelopmental conditions (such as intellectual disabilities, attention, learning, communication, or motor conditions). It is the largest clinically-integrated autism research project in the province of Quebec and one of the largest in the world. The goal of Q1K is to learn more about genetics, brain functioning, and behaviour in people with an autism and/or another neurodevelopmental (NDD) diagnosis.

What makes Q1K special is that it includes participants of all ages, as well as participants who have different profiles. We think it’s important for many kinds of people to be represented in research about ASD and other NDDs. Participants engaged in Q1K will enable researchers across Quebec and abroad to conduct research project and make new discoveries.

The Q1K Registry is one part of Q1K. The Q1K Registry invites interested participants and their families to contribute to research projects led by members of our network of researchers.

If you are interested in participating in a research project on ASD and/or NDDs, you can sign up for the Q1K Registry. Once registered, researchers looking for participants can contact you to take part in their study. These researchers are from Quebec universities and study ASD and related conditions. Topics they study include behaviour, language, genetics, brain structure and function, therapy, treatments, and many more areas. We hope that this research will help autistic people and their families, in Quebec and beyond.

The Q1K Registry includes people of all ages with ASD and/or related NDDs diagnoses who live in Quebec. Their immediate family members, including parents, children and siblings, are also invited to join. To enrol yourself into the Q1K Registry, you must be over 18 years old and have no legal guardian. You can also enrol your child(ren) or dependant(s) if you have signing authority for the individual(s). You cannot enrol other adults who are not under your care; but you can invite them to enrol themselves.

Enrolling in the Q1K Registry takes about 15 min. Contact, sociodemographic and clinical information are collected. People who join the Q1K Registry may be invited to take part in one or more research projects. For example, Q1K will be asking eligible and interested people if they want to take part in research that includes genetic testing, neuroimaging and in-depth behavioural assessments.

Importantly, even if someone joins the Q1K Registry, if is always possible to decline future invitations to participate in research.

Yes, if an ASD or neurodevelopmental diagnosis is suspected, but hasn’t been confirmed yet, it is still possible to join.

You may ask us any questions you have about the Q1K Registry before deciding to join. If you have questions about this form, or if you would rather enrol by phone, you may contact us.

Join the Québec 1000 Families Registry

Step 1 : 
Fill out the enrollment form.

Step 2 :
Read the information and consent form.

Step 3 :
Sign the consent form.

Step 4 : 
Fill out the registration form.

Step 5 : 
Complete your registration with a team member.

Forms can be completed and signed online, securely and confidentially.
Assistance is available at any point of the registration process.

I would like to register myself or a family member in the Q1K Registry

I would like to refer a patient to the Q1K Registry