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.
Clinicians can share this opportunity with their patients and refer those who are interested to the Q1K Registry. If a patient wishes to be referred, as a clinician, you can either:
- Fill out our confidential and secure online referral form by clicking on the button below. You will need to enter the patient’s contact information and the Q1K team will send them (or their parent/legal representative) an invitation to sign up. We will indicate that you referred them.
- Share this opportunity with your patients (or their parent/legal representative), so they can sign themselves up via this website. You may share this poster with your patients or print and display it in your clinic.
- Patients with suspected or confirmed ASD or NDD diagnoses
- Patients can be of any age (child or adult)
- Patients should be living in Quebec
- If a patient is signed up, their immediate family members (parents and siblings) can also sign up
Patients may receive information about the project via the Q1K website and/or email. For patients who are children or for adults under the care of someone else, their parent or legal representative can sign them up. Those who are interested will be invited to provide information in online forms, including a consent form and a brief questionnaire. The Q1K team will contact the patients (or their parent/legal representative) to review the consent form with them to make sure they understand the project and give them a chance to ask questions.
Patients may be contacted about research projects for which they may be eligible. Researchers must apply to use the Q1K Registry, and we ask patients (or their parent/legal representatives) whether they wish to be contacted about a given project. We are careful not to over-solicit patients and they can withdraw from the Q1K Registry at any time.
You can find more information about the Q1K Registry on our dedicated website. You may also email us at firstname.lastname@example.org and we will connect you with one our of Q1K clinician partners or your local site’s research coordinator.
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