While I can't say that AGRE has provided us with work product that changed my boys' lives, they've been accommodating at every turn (even sending the phlebotomist to our house once!), and provided reports on what they measured.
I know we all have overburdened family lives, and many have at best mixed views of the utility of genetic study, but I that, like AGRE, this is a smart study design and worth encouraging your participation. Their recruitment letter follows. --LD
The Simons Simplex Collection is following in the tradition set by AGRE in setting up a biobank of phenotype and biological samples of families with exactly one child with ASD and at least one child with typical development to be available to interested scientists around the world.
We are looking for families interested in helping researchers understand the genetic causes of ASD. Sponsored by the Simons Foundation, Columbia University is one of 11 clinical centers around the U.S. and Canada that are recruiting families to participate. The Simons Foundation provides support to researchers studying ASD. For additional information about the Simons Foundation, see: www.simonsfoundation.org and http://www.post-gazette.com/pg/05349/622925.stm
For this study, we are recruiting families who have:
- One child aged four or older with an ASD or a suspected ASD diagnosis,
- (Preferably) one or more child(ren) age three or older without ASD, and
- Both biological parents also willing to participate.
Family participation in this study involves the completion of interviews, questionnaires, and a blood draw. Families are also asked for permission to donate a portion of their blood samples to the Simons Simplex Collection. The Simons Simplex Collection obtains, stores, and distributes DNA to researchers who are studying the genetics of ASD. Through performing genetic analyses, we hope to discover information that will help us better understand and treat this disorder.
Each family member will receive $50 upon completion of the protocol. We will also provide each family with a brief written report describing the results of the assessment.
Thank you in advance for your time and assistance. We look forward to working with you in the near future.
Name of Study: “Genetics of Developmental Differences” and “Molecular and Family Genetics of Autism and Autism Spectrum Disorders (Simons Simplex Collection)”
Location: New York State Psychiatric Institute at Columbia University Medical Center, New York, NY, 10032
Eligibility Criteria: One child age 4 or older with ASD or a suspected ASD diagnosis, and both biological parents willing to participate
Principal Investigator: Bradley Peterson, MD
Research Coordination (phone: 212-543-6705, e-mail: email@example.com)
Cassandra D’Accordo, Recruitment Coordinator (212-543-0153, firstname.lastname@example.org)