Q1K | Québec 1000 Families is Canada’s Autism Registry, BioBank & Registry | #NotAnAutisticAlly

Q!K & MSSNG

[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]

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Here’s some quick information for now via their website.


Québec 1000 Families is:

Discovery:
Researchers and collaborators working together to better understand autism.

Engagement:
Autistic people and their families, clinicians, and professionals, contributing to research, together.

Change:
Using knowledge to improve and transform autism services and care.


Research Engagement

Québec 1000 Families (Q1K) is a unique initiative that draws on both autism expertise in Québec with autistic people’s and their families’ experiences to accelerate the discovery process and transform care and services.

Q1K will build a large database that researchers from around the world can access to conduct research projects.

Its first phase, the Q1K Registry, will make it possible for Quebec researchers to offer autistic people opportunities to participate in research.

The Q1K Registry invites people of all ages who have autism and/or neurodevelopmental diagnoses to register. Immediate family members, including parents, children, and siblings of autistic people, are also invited to register.


When Research is Inspired

When research is inspired by autistic people and their families, it becomes an engine of transformation and change for the entire community.


Research Objectives

While we’ve come a long way in better understanding the spectrum, many questions remain about how to best serve autistic individuals and their families. The goal of Q1K is to accelerate discoveries that can help elaborate services and programs that support autistic individuals in achieving their goals.

An Innovative and Inclusive International Cohort

  • Innovative and multidisciplinary research protocol developed collaboratively by 12 researchers with complementary expertise.
  • Creation of a next-generation resource that combines the most advanced methods and techniques to better understand genetic, brain, and behavioural domains.
  • Support and facilitate research participation for individuals of all ages and for groups typically underrepresented in autism research. The Q1K protocol is designed to be adaptable to different participant profiles.
  • Following the principles of open science, Q1K will be an accessible research resource to stimulate the discovery process in Quebec and around the world.

Q1K Governance

  • governance framework defines Q1K’s structure, including its protocol and research agreements, data collection, return of results within clinics, and research access.
  • Developed using a scientific and ethical evaluation based on the Ministry of Health and Social Services’ framework  for multi-centric research projects.

Towards a Learning Health System

  • Engaging clinicians as partners who can share opportunities to participate in research.
  • Harmonization of clinical and research data collection to reduce the burden of time and energy for families interested in participating.
  • Measures selected for research validity as well as clinical relevance. The protocol provides a feedback loop to return research results back to clinics.

Resources

  • The Q1K Registry is a provincial resource that compiles socio-demographic and clinical data of individuals interested in participating in various research projects. 
  • The Q1K Biobank stores biological samples such as DNA and stem cells to accelerate the discovery process in basic research and genetics.
  • The Q1K Database compiles next-generation genetic sequencing data, clinical, behavioural and cognitive findings, as well as electrophysiology and magnetic resonance imaging data using innovative state-of-the-art methodologies.
Support

Q1K is made possible thanks to the support of our partners:


Core Team Members

Fabienne Samson
Project Manager

Oduro Oppong-Nkrumah
Data Manager

Afiqah Yusuf
Postdoctoral Fellow

Mandy Steiman
Clinical Psychologist

Christian O’Reilly
Research Associate


Community Engagement Committee

Aparna Nadig
Co-Chair
TACC regular researcher member

Sylvie Lauzon
Co-Chair
TACC associate member

Alena Valderrama
Researcher member

Cynthia Di Francesco
Trainee member

Mathieu Giroux
Autistic member

Lucila Guerrero
Autistic member

Alexia Korban
TACC office representative


Q1K Sites

Q1K will launch through partner university health centres to allow for the participation of families across Quebec. At each site, a team of researchers, clinicians and research professionals will welcome and guide participants and their families through the various phases of research participation.


Guy Rouleau 
Principal Investigator

Mayada Elsabbagh
Co-Investigator

Alan Evans
Co-Investigator

Julie Scorah
Clinician Partner

Jessica Charlebois
Research Coordinator

Karine Malenfant
Research Coordinator


Ridha Joober
Co-Investigator, Clinician Partner

Carl Ernst
Co-Investigator

Joyce Loomer
Research Coordinator


Laurent Mottron
Co-Investigator

Pascale Grégoire
Clinician Partner

Jade Desrosiers
Research Coordinator


Sébastien Jacquemont
Co-Investigator

Jacques Michaud
Co-Investigator

Sarah Lippé
Co-Investigator

Baudouin Forgeot d’Arc
Co-Investigator, Clinician Partner

Charles-Olivier Martin
Research Coordinator


Mélanie Couture
Co-Investigator

Catherine Raby-Nahas

Clinician Partner

Marilyn Gagnon
Research Coordinator


Mélissa Carter 
Co-Investigator, Clinician Partner

Mireille Cloutier
Research Coordinator


Québec 1000 Families: An Initiative of the Transforming Autism Care Consortium (TACC).

This large network includes more than 70 researchers from Québec universities and health institutions. It also brings together hundreds of trainees and associate members, including clinicians, professionals, educators, autistic people, families, and other community members.

By mobilizing researchers and community members, TACC contributes to accelerating the process of discovery and the integration of research knowledge into practices and policies, to the benefit of autistic people and their families.


Québec 1000 Families

Québec 1000 families (Q1K) aims to engage autistic people and their families as partners in an innovative, open, and inclusive scientific initiative.

By building links throughout the community, Q1K will facilitate the transfer of information and knowledge into policy and clinical practice.


Q1K: A History of Collaboration

Collaboration is at the heart of Q1Kresearcherssharing their expertise, professionals and cliniciansfacilitating the integration of research in clinical settings, and research teams joining forces across sites. This collaborative structure also allows research to be grounded in the reality of families and to foster social inclusion. A collaborative model allows the health care system to evolve and transform, as well as integrate new knowledge and improve supports for autistic people and their families.


Who we are

The Transforming Autism Care Consortium (TACC) is a research network that connects and mobilizes Quebec’s strengths in autism research to improve the quality of life of people with autism and their families. We accomplish this by accelerating scientific discovery, building capacity, and integrating evidence into practice and policy.


What is the Québec 1000 families initiative?

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.

How is Q1K unique?

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.

What is the Q1K Registry?

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.

Who can enrol in the Q1K Registry?

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.

What happens if I join the Q1K Registry?

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.

Can I join if a diagnosis hasn’t been confirmed yet?

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.


Email: q1k@rtsa-tacc.com
Telephone : 438-349-9440


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Note/Warning:

Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid. 

ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.

The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t workIn study after repeated study: ABA (conversion therapy) doesn’t work. 

What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.


The ‘cure’ for Autistics not born yet is the prevention of birth. 

The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome. 

This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.


Fact: You can’t cure Autistics from being Autistic.

Fact: You can’t recover an Autistic from being Autistic.

Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.


[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]


Fact: Vaccines Do Not Cause Autism.


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