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Calls to Action

Parents As Partners In Research: Projects

Clinical research projects currently seeking participants.
April 23, 2007

The Seaver Center for Autism Research and Treatment/Mount Sinai Medical Center, New York, NY

Child Study:

"Divalproex Sodium vs. Placebo in Child and Adolescent Autistic Disorder"

Divalproex Sodium (Depakote) Study examines efficacy of Divalproex sodium, a drug that is already FDA-approved for the treatment of epilepsy or manic episodes associated with bipolar disorder. This mood stabilizer may help in reducing autistic symptoms, such as impulsivity, aggression, and social and language deficits, in children/adolescents with autism. Eligibility is as follows:

  • Participant must be between 5 and 17 years of age.
  • Participant must have diagnosis of Autism, Asperger's or PDD-NOS
  • Participant must be able to taper off current psychotropic medications
  • Participant must exhibit signs of aggressive behavior.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


The Seaver Center for Autism Research and Treatment/Mount Sinai Medical Center, New York, NY

Child Study:

"Citalopram (Celexa Study)"

Citalopram (Celexa Study) - This study examines the efficacy of Citalopram, a selective serotonin reuptake inhibitor. Dysregulation of the serotonin system has been linked to autistic symptoms and to repetitive behaviors. This study aims to improve repetitive behaviors and symptoms in children and adolescents with autism spectrum disorders. Serotonin levels in the blood will also be measured in conjunction with this study. Eligibility is as follows:

  • Participant must be between 5 and 17 years of age.
  • Participant must have diagnosis of Autism, Asperger's or PDD-NOS
  • Participant must be able to taper off current psychotropic medications, high levels of repetitive behavior.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


The Seaver Center for Autism Research and Treatment/Mount Sinai Medical Center, New York, NY

Child Study:

"Levetriacetam (Keppra) Study"

Levetiracetam (Keppra) Study examines the efficacy of a new FDA-approved anti-epileptic medication. Pilot studies indicate that this medication may be helpful in reducing autistic symptoms, primarily hyperactivity as well as other associated symptoms in children and adolescents with autism. Eligibility is as follows:

  • Participant must be between 5 and 17 years of age.
  • Participant must have diagnosis of Autism, Asperger's or PDD-NOS
  • Participant must be able to taper off current psychotropic medications, high levels of repetitive behavior.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


The Seaver Center for Autism Research and Treatment/Mount Sinai Medical Center, New York, NY

Genetics Repository:

Genetics Repository - In conjunction with these two other studies, a genetics component will be offered to those interested in donating blood to the genetics repository at the National Institute of Mental Health. These blood samples will be analyzed as part of a larger national database. Parents of autistic children will also be encouraged to donate samples so that scientists can look at chromosomal linkage between healthy parents and their autistic children. Eligibility is as follows:

  • Participant must be enrolled in the Citalopram (Celexa) Study
  • Or have more than one child/sibling with an Autism Spectrum Disorder.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


The Seaver Center for Autism Research and Treatment/Mount Sinai Medical Center, New York, NY

Adult Study:

"Fluoxetine vs. Placebo in Adult Autistic Disorder"

Fluoxetine (Prozac Study) examines the efficacy of Fluoxetine, a medication from the family of drugs known as selective reuptake inhibitors, or SSRI's. Fluoxetine is already FDA-approved for the treatment of patients suffering from depression and other mood disorders, and researchers believe it may be helpful in improving compulsivity, depression, anxiety, and social impairments in children, adolescents, and adults with autism spectrum disorders. Eligibility is as follows:

  • Participant must be an adult between the ages of 18-65
  • Participant must be diagnosed with an Autism Spectrum Disorders, High levels of repetitive behavior
  • Participant must be able to taper off current psychotropic medications or are not taking other medications.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


The Seaver Center for Autism Research and Treatment/Mount Sinai Medical Center, New York, NY

"5HT Imaging"

5HT Imaging - This study will be done in conjunction with Columbia University. Using Positron Emission Tomography (PET), this study will examine the activity of serotonin receptors in the brains of adults with autism spectrum disorders as compared to healthy controls. Eligibility is as follows:

  • Participant must be between 18 and 40 years of age.
  • Participant must be diagnosed with an Autism Spectrum Disorder.
  • Participant must be free of psychotropic medication.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


The Seaver Center for Autism Research and Treatment/Mount Sinai Medical Center, New York, NY

"Neuroimaging Studies"

Neuroimaging Studies analyze images of brain regions associated with emotional processing in subjects with Autism Spectrum Disorders. Using positron emission tomography (PET) and magnetic resonance imaging (MRI), we aim to link abnormal brain metabolism with specific compulsive and social deficit symptoms, evaluate predictors of pharmacological treatment outcome and assess the role of serotonin function in the brains of autistic adults. Another study using an MRI and PET scan examines the amount of white matter (myelin) and its connections in the brain. Eligibility is as follows:

  • Participant must be between 18 and 40 years of age.
  • Participant must be diagnosed with an Autism Spectrum Disorder.
  • Participant must be free of psychotropic medication.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


The Seaver Center for Autism Research and Treatment/Mount Sinai Medical Center, New York, NY

Multiplex Families only:

"Family Genetic Studies Program"

Family Genetic Studies Program are a number of studies being conducted exploring the genetic component of Autism Spectrum Disorders, focusing on families with more than one child with autism spectrum disorders. These studies combine the direct study of families of autistic individuals with the latest advances in molecular biology and quantitative genetics. Eligibility is as follows:

  • Families with more than one child with an autism spectrum disorder.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


Yale Child Study Center, New Haven, CT

"Let's Face It!"

"Let's Face It!"is a face training study using a computerized platform. This study tests whether children who use Let's Face It! improve in their ability to recognize faces and facial expressions. Let's Face It! was developed primarily as a tool to help children with autism and related disorders, since children with these disorders have trouble recognizing faces and interpreting facial expressions. However, it seems likely that Let's Face It! may be helpful for a variety of different children, including typically developing children. Eligibility is as follows:

  • Open only to individuals who have been diagnosed with autism, Asperger's syndrome, or pervasive developmental disorder no otherwise specified (PDD-NOS).
  • Must be between the ages of 5-35
  • Must have the ability to play on a computer with minimal supervision. (Not all young children (e.g., 5-10 year olds) will be able to master the computer games, however, a large majority of these younger children can play the games with minimal supervision)

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


Yale Child Study Center, New Haven, CT

"Social Skills Development in Children with Autism Spectrum Disorders"

Social Skills Development in Children with Autism Spectrum Disorders has several objectives. The first is to learn whether group therapy is an effective method for teaching social skills to children with autism, Asperger's disorder, or pervasive developmental disorders not otherwise specified (PDD-NOS). The second objective is to learn whether parents of participating children will find the program acceptable. The third objective is to develop a manual that will describe the program in a step-by-step fashion, so that the program can be implemented in other places. Eligibility is as follows:

  • Children diagnosed with an autism spectrum disorder (autism, Asperger's disorder, or PDD-NOS) between 8 and 11 years of age
  • Children who live within driving distance such that they can attend a group therapy weekly for twelve consecutive weeks.
  • You must be willing to participate in the study for a varied time frame of 14 and 28 weeks.
  • You must be willing to participate in an assessment at the Yale Child Study Center, where you will complete questionnaires regarding your child's behavior. Your child would be interviewed by a member of our research team to assess the extent of his/her social difficulties and assess your child's communication skills. While we expect all children with autism spectrum disorders to have significant communication impairment, certain basic receptive and expressive skills will be necessary for effective participation in the group. We will also visit your child's school to observe his/her social behavior during lunch or recess, as well as in the classroom.
  • You must be willing to participate in our treatment phase consisting of twelve, 90 minute group therapy sessions held in the late afternoon at the Yale Child Study Center.

    For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


Yale Child Study Center, New Haven, CT

"Risperidone and Parent Management Training in Children with Pervasive Developmental Disorder"

Risperidone and Parent Management Training in Children with Pervasive Developmental Disorder is designed to investigate the additive value of a structured parent management training program to a known effective psychopharmacological intervention in treating children with Pervasive Developmental Disorder (PDD) who have serious behavioral problems. Risperidone, a medication, is effective in reducing serious behavioral problems such as aggression and self-injury in many children with Pervasive Developmental Disorders. Behavioral treatments, including parent management training (PMT), have long been used in children with PDD to improve social skills, communication, and daily living skills. Although commonly used in children with PDD, PMT has not been evaluated in a large-scale study. This study will compare medication only to medication plus PMT. The primary goal of this study is to design a "best practice" treatment approach for PDD, and to determine if structured PMT permits successful discontinuation of medication after 6 months of effective treatment. Eligibility is as follows:

  • Healthy children with PDD, or Autism Spectrum Disorder, who are between the ages of 4 and 13.
  • Display at least moderate behavioral problems, such as tantrums, self-injury, argumentativeness, and defiance.
  • Not be on medication currently or be on an ineffective medication.
  • You must be willing to participate in a telephone consultation which allows families to learn more about the project. Potentially eligible children and their parents will be invited to attend a screening visit.
  • You must be willing to participate in a screening visit where several measures will be administered to determine if your child is healthy and that there is no reason that the child should not be in the study.
  • Eligible children are then randomly assigned (like flipping a coin) to one of two groups: a medication treatment only group (Risperidone) or a medication plus PMT group. Children in both treatment groups (medication only and medication plus PMT) will be seen on a regular basis to adjust the medication and evaluate response (improvement). Parents of children assigned to the combined treatment group will have weekly PMT sessions for about 3 months. After that, the visits will be less frequent.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


Yale Child Study Center, New Haven, CT

"Citalopram (Celexa™) Treatment in children with Autism Spectrum Disorders and High levels of Repetitive Behavior"

Citalopram (Celexa™) Treatment in children with Autism Spectrum Disorders and High levels of Repetitive Behavior examines whether children with autism spectrum disorders and repetitive behavior (such as repetition of routines, repetitive play and speech and stereotypes) will improve with treatment with Citalopram. Eligibility is as follows:

  • Children between 5 and 17 years of age who have a diagnosis of autism, Asperger's disorder, or PDD-NOS, and who exhibit a high level of repetitive behavior, and who do not need treatment for other psychiatric or psychological conditions.
  • The study wo
    ld include an initial assessment of the child, and then regular visits to the Yale Child Study Center for medication monitoring.
  • There are two phases to the study. In the first phase, the child will be assigned to receive either the medication (Citalopram-in a liquid form) or a placebo (liquid form). Each child is followed carefully by a clinical team with experience treating children with autism spectrum disorders.
  • The treatment team will meet with you and your child every two weeks to assess any side effects or adverse effects to the medication, and make appropriate adjustments in the dosage. Neither the parents nor the treating clinicians will know whether Citalopram or placebo is being administered (but that information will be recorded separately and available at the Yale Child Study Center.) The second phase of the study will begin at the end of twelve weeks. Children who are responding to the medication (Citalopram or placebo) will continue for 16 additional weeks. Children who have not responded will be offered an open trial of Citalopram for 12 weeks.
  • You must be willing to participate in the study for a varied time frame of 28 weeks.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


Autism Tissue Program, Princeton, New Jersey

"Give the Gift of Hope"

Organ and tissue donation programs play a critical role in research efforts focused on finding treatments and cures for many diseases, including autism. The Autism Tissue Program is a parent-led tissue donation program dedicated to autism spectrum disorders established and funded by the National Alliance for Autism Research (NAAR) and supported by the National Institutes of Health.

The Autism Tissue Program makes post-mortem brain tissue available to as many qualified scientists as possible to advance autism research. In the field of neurosciences, as it pertains to autism research, human brain tissue is the most valuable material on the planet, enabling scientists to go far beyond the constraints of other technologies and study autism on a cellular and molecular level. Without this tissue - the most fundamental, rare and essential resource - studies that could lead to earlier diagnosis, effective medical treatments and eventually a cure for autism spectrum disorders cannot be done.

Tragically, this tissue comes from young children, adolescents and adults with autism who pass away unexpectedly. Dealing with such tragedy is devastating. However, many donor parents have said they decided to make their donation to keep hope alive for families facing the disorder.

All tissue recovery is coordinated with the family's funeral arrangements. Loved ones are treated with the utmost respect and dignity. Tissue recovery does not affect funeral arrangements in any way, including the viewing. The Autism Tissue Program assumes all costs related to obtaining tissue.

The Autism Tissue Program is dedicated to making families aware of the need for brain tissue donation and the importance of understanding the neuropathology of autism.

You can help if you are the parents of a child or children with autism, are related to someone with autism, or have autism yourself by enrolling in The Autism Tissue Program.

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


The Autism Center at UMDNJ - New Jersey Medical School, Newark, NJ

"New Jersey Language & Autism Genetics Study (NJLAGS)"

New Jersey Language & Autism Genetics Study is the first large genetics study to look at a connection between autism and language-based learning disabilities in New Jersey. Over a 5-year period, NJLAGS will directly explore the possible genetic link between autism and language disorders. Previous research has shown that families who have a member with the diagnosis of autism are more likely to have other family members who have had some type of language-based development problems (i.e. language delay, language disability, dyslexia). This project's goal is to better understand this occurrence by gathering mental health information, language/learning information and genetic material (i.e. DNA from a blood sample) from people who either have autism or are related to someone who has autism.

In addition, participants in this study will have their genetic material anonymously stored at The National Institute of Mental Health (NIMH) cell and DNA repository. This will enable family members who provide only one blood sample and one clinical assessment to participate in multiple future studies, thus greatly multiplying the scientific benefits of their participation, and leading to a better understanding and better treatment of individuals with Autism Spectrum Disorders.

Families are eligible if:

  • They have a child age 4 or older who is diagnosed as having autism
  • They have at least 5 immediate or extended family members available to participate (including the child with autism)
  • They have a history of language-based learning problems in at least one other family member beside the child with autism
  • The participating family members are native speakers of English

For information about enrolling in this program, contact Stacy Fass at (888) 777-6227, ext. 34, or via e-mail at sfass@naar.org.


Criteria for Parents as Partners in Research:

In order for a study to be accepted for listing on this site, NAAR's Director of Research & Programs must find the following:

  • The study design appears likely to produce scientifically meaningful information
  • The study appears to have a favorable risk-benefit ratio for subjects
  • The study has been approved by an Institutional Review Board

Submit a Study for Parents as Partners in Research:

For each study, please submit the following:

  • Protocol for the study (must identify sponsor, principal investigator, and name of medication(s), if any)
  • Consent/assent forms
  • A one-paragraph description for posting, if accepted
  • IRB approval letter

Documents should be e-mailed to Stacy Fass at sfass@naar.org in Microsoft Word format. Fax the IRB letter to Stacy Fass at (609) 430-9505. Documents will be handled in confidence for discussion with NAAR's Director of Research & Programs. The materials will be reviewed and you will be notified if the study meets its criteria as set forth above. NAAR does not charge a fee for listing of approved studies.