QUESTIONNAIRES

Clinical Genetic Evaluation and Counselling of Autism Spectrum Disorders: Patient and Family Perspectives of their Value and Impact

Researchers: Prescilla Carrion (MSc) and Suzanne Lewis, MD, FRCPC, FCCMG (University of British Columbia, ASD-CARC Team Members)

Prescilla Carrion (MSc, CGC, CCGC) Suzanne Lewis (MD, FRCPC, FCCMG)

Purpose of the Study: The inclusion of a Medical Genetics Consultation is becoming increasingly accepted and recognized as an important part of the standard of care in ASD diagnosis, evaluation and counselling. It is used to provide parents, families, individuals on the spectrum and health care providers with as much information as possible about causative factors involved in ASDs that may influence management and outcomes for people living with autism.

This study is looking at whether a medical model for evaluating ASDs may improve:

Understanding of the causes of ASD;
The ability to better manage ASD conditions with advance knowledge; and,
Outcomes and hopefully quality of life for individuals and their families.

The Questionnaire: The purpose of this questionnaire is to measure your perceptions on the Value and Impact of a Medical Genetics Assessment for ASDs. The questionnaire also provides a unique opportunity for respondents to express their views and share experiences about other important aspects of their diagnosis.

How long will it take? Participation involves completion of an online questionnaire, which will take approximately 15-30 minutes.

Who can participate? Adults with an ASD or the parents/guardians of children who have an ASD.

Please note that both parents of a child with an ASD have the opportunity to fill out the questionnaire independently if they wish to do so.

How can you participate? Login or Register. After you have logged in just click on your own name and then click on the questionnaire "Clinical Genetics Evaluation and Counselling for Autism Spectrum Disorders".

If you have any questions about this study, please contact:

Prescilla Carrion at 604-875-3023 or pcarrion@interchange.ubc.ca.
Susan Creighton at 604-875-2000 x5439, or
Suzanne Lewis at 604-875-2157