PUZZLE MOUSEBETA ABOUTInstructions and ConsentYou will be asked a set of questions regarding your child's typical behavior. This will only take five to ten minutes of your time.The survey will begin on the next page, but first you need to agree to the consent form below.

Click or tap on each section title to view its details.[expand all sections] [collapse all sections]IntroductionPlease read this form carefully. The purpose of this form is to provide you with important information about taking part in a research study. If you have any questions about the research or any portion of this form, please ask us. Taking part in this research study is up to you. If you decide to take part in this research study we will ask you click on the box I Agree to participate. By choosing I Agree, you are also consenting that you are the childs parent or the childs legal guardian. You may choose to print a copy of this form for your records. The Principle Investigator for this study is Dr. Dennis P. Wall. The study coordinator for this study is Jena Daniels. We will refer to this person as the researcher throughout this form. Study background: Developmental delays are diagnosed by the analysis of individuals behavioral characteristics. Families may wait up to 13 months between initial screening in a clinical setting with a professional to diagnosis, and even longer if part of a minority population or lower socioeconomic status. These delays directly translate to the delays in early intervention opportunities that have significant positive impacts on a childs development. The average age of diagnosis in the United States is about 4 years and an estimated 27% remain undiagnosed at 8 years of age. At these late stages in development, many of the opportunities to intervene with therapy have evaporated. Therefore, the need for accurate and rapid approaches that can detect individuals most likely to have autism spectrum disorders and that can reach a larger percentage of the global population in need of care is substantial.Why is this study being done?Substantial attention has been given to the generation of abbreviated screening examinations for Autism Spectrum Disorders (ASDs), which are meant to foster more rapid child assessments. These examinations include, but are not limited too, the Autism Screening Questionnaire (ASQ, built to discriminate between PDD and non-PDD diagnoses), the Modified Checklist for Autism in Toddlers (MCHAT), and the Social Communication Questionnaire (SCQ). However, their clinical uptake is limited, largely due to low accuracy. Therefore, a rapid and accurate approach that detects the core features of ASDs and can identify those most likely to have an ASD is essential. We hypothesize that we can detect the core features of ASD in short home videos. We seek to determine if observation of autistic behavior, by video and survey responses, can be used to create a valid method of screening and evaluation.How long will I take part in this research study?We expect that you will spend minimal time participating in this study (no longer than 10 minutes). During this time, we will ask you to complete a small survey about your childs diagnosis history with ASD and upload a home video of your child. If you choose to voluntarily submit your email address to be re-contacted for future research purposes, we plan to keep your contact information for up to five years. However, there will be no feedback or results returned to you in regards to this study.What will happen if I take part in this research study?If you agree to take part in this study, we will ask you to answer some questions regarding your childs history with autism and will ask you to upload a home video of your child with these video submission recommendations: The videos should be a 2-5 minute observation including the following: Caregiver smiles and attempts to get childs attention by calling his/her name Conversation between caregiver and child (according to childs abilities) Child plays with a toy (doll, action figure, etc.) or an object that may initiate pretend play Caregiver plays with a toy along with child Caregiver points to specific out of reach toy/object and asks child to bring overHow will you keep my study records confidential?We will keep the records of this study confidential by storing them on a secure, completely privatized and password-protected web portal. We will make every effort to keep your records confidential.The following people or groups may review your study records for purposes such as quality control or safety: The Principle Investigator and any member of his research team The Institutional Review Board at Harvard Medical School. The Institutional Review Board is a group of people who review human research studies for safety and protection of people who take part in the studies.We will store your data for three years. The results of this research study may be published, used as preliminary data for future studies, or may help to define a valid method for recognizing the core features of autism. We will not put identifiable information on data that are used for these purposes.Study Participation and Early WithdrawalTaking part in this study is your choice. You are free not to take part or to withdraw at any time for any reason. No matter what you decide, there will be no penalty or loss of benefit to which you are entitled. If you decide to withdraw from this study, the information that you have already provided will not be collected. Remember, you are consenting for yourself and for your child to participate.What are the risks of taking part in this research study?Questionnaire/Survey Risks: You may feel emotional or upset when answering some of the questions. You may choose to take a break or no longer answer any questions at anytime. You may be uncomfortable with some of the questions and topics we will ask about. You do not have to answer any questions that make you feel uncomfortable. The subject of this study is a stigmatized health condition and there is a small risk for disclosing data; however, we have taken the most stringent efforts to minimize this. All data is kept confidential and securely protected, encrypted and privatized.Loss of Confidentiality:No identifiable information will be used to link your data to identifiable information. The video-hosting infrastructure is completely privatized and password-protected. Data will be encrypted and stored on a secure server in the Center for Biomedical Informatics at Harvard Medical School.Are there any benefits from being in this research study?There are no benefits to you from taking part in this research. Others may benefit in the future from the information that is learned in this study.Will I get paid for taking part in this research study?You can voluntarily choose to be entered in a raffle to win an iPad upon completion of the questionnaire.What will it cost me to take part in this research study?There are no costs to you for taking part in this research study.If I have any questions or concerns about this research study, who can I talk to?You can call us with any concerns or questions. To contact the study coordinator, call: 617-432-1767 or email: puzzlemouse@hms.harvard.edu For questions, problems, concerns or complaints about the study, or for information about your rights as a research participant: Carolyn M. Connelly, PhD, Director, Office of Research Subject Protection, Harvard Medical and Dental Schools, 617 432 0651.Parte superior do formulrioStatement of ConsentI have read the information in this consent form including risks and possible benefits.I have been given the chance to ask questions. My questions have been answered to my satisfaction.Please click one of the following options. Remember, by choosing I Agree, you are consenting for you, your child, and that you are the childs parent or the childs legal guardian.

The SurveyReady, set, answer!

Parte superior do formulrioBackground InformationYour e-mail address

We want to keep you informed of how your participation helps us and the community.Your child's name

His or her date of birthe.g. 8/15/08Location(optional)

Has your child been diagnosed with an Autism Spectrum Disorder (ASD)?YesClassic AutismAsperger SyndromePervasive Developmental Disorder Not Otherwise Specified (PDD-NOS)Noneurotypical developmentAttention Deficit Hyperactivity Disorder (ADHD)Other:What diagnostic tool was used?(Leave blank if unsure)ADI-R (Autism Diagnostic Interview - Revised)ADOS (Autism Diagnostic Observation Schedule)Other:Behavioral QuestionsAnswer the questions to the best of your ability. Further explanation available by clicking the 'show examples' text.1. Can your child have a back-and-forth conversation with you?show examplesWill s/he say something when engaged in conversation?Will s/he ever ask you a question or build on what you have said so that the conversation will continue?Will s/he converse normally on topics that you have introduced?Can s/he also introduce appropriate topics?Conversation flows, with your child and another person both contributing to an ongoing dialogue.Occasional back-and-forth conversation, but less frequent than normal or limited in flexibility or topics.Little or no back-and-forth conversation; difficult to build a conversation even with apparent social talk by subject; your child fails to follow conversation topic; may ask or answer questions but not as part of a dialogue.Very little spontaneous speech.N/A.2. When your child plays with toys, does s/he look at you to see if you are watching?show examplesYes, my child will spontaneously look at me to check my facial expressions while s/he is playing with toys.Sometimes, my child will look at me when prompted or when I touch the toy s/he is playing with.No, my child focuses on the toy and does not look at me while playing.3. Does your child maintain normal eye contact for his or her age in different situations and with a variety of different people? What is the most abnormal behavior your child has exhibited?show examplesDoes s/he sometimes watch you walk into the room?Does s/he look back and forth to your face as other children would?What about with others?Normal eye contact used to communicate across a range of situations and people.Makes normal eye contact, but briefly or inconsistently during social interactions.Uncertain/occasional direct gaze, or eye contact rarely used during social interactions.Unusual or odd use of eye contact.N/A.4. When were your child's behavioral abnormalities first evident?show examplesWhat was her/his play like?What toys did s/he play with?Any pretend games?How was her/his talking then?What about looking after herself/himself? Feeding? Toileting? Dressing?What were her/his relationships with other children like?Development in the first 3 years of life clearly normal in quality and within normal limits for social, language, and physical milestones; no behavioral problems that might indicate developmental delay.Development potentially normal during first 3 years, but uncertainty because of either the quality of behavior or the level of skills in comparison to children of the same age.Development probably abnormal by the age of 3 years, as indicated by developmental delay, but milder and not a significant departure from normal development.Development definitely abnormal in the first 3 years, but not obvious as autism.Development definitely abnormal in the first 3 years and quality of behavior, social relationships, and communications strongly indicative of autism at that age.Unsure.5. Does your child play with his or her peers when in a group of at least two others? What is the most abnormal behavior your child has exhibited? For children 10 or older, please answer according to how the child behaved between the ages of 4 and 5show examplesIs s/he different with children or others outside your immediate family?Does s/he play cooperatively in games that need some participation such as musical games, hide-and-seek, or ball games?Would s/he initiate such games? Or actively seek to join in?Can s/he take different parts in these games (like being chased or doing the chasing, or hiding and looking for the other person)?Actively seeks and plays cooperatively in several different groups (three or more people) in a variety of activities or situations.Some cooperative play, but tends not to initiate, or tends to be inflexible in play activity.Enjoys "parallel" active play (such as jumping in turn on a trampoline or falling down during "ring around the rosie"), but little or no cooperative play.Seeks no play that involves participation in groups of other children, though may chase or play catch.N/A.6. How well does your child understand spoken language, based on speech alone? (Not including using clues from the surrounding environment)show examplesCan you send her/him into another room to get something like her/his shoes or blanket?What about your purse or a book?Could s/he deliver a simple message?Could s/he follow an instruction with an "if" and a "then"?Does s/he understand if you say "no" without gesturing or raising your voice?How about "yes" or "okay"?How about names of favorite foods or toys or people in your family?Do you think s/he understands 10 words? 50?In response to a request can place an object, other than something to be used by himself/herself (such as the child's shoes or toy), in an new location in a different room (For example, "Put the keys on the kitchen table")In response to a request can usually get an object, other than something for herself/himself from a different room ("please get the keys from the kitchen table"), but usually cannot perform a new task with the object such as put it in a new place.Understands more than 50 words, including names of friends and family, names of action figures and dolls, names of food items, but does not meet criteria for the previous two answers.Understands fewer than 50 words, but some comprehension of "yes" and "no" and names of favorite objects, foods, people, and also words within familiar routines.Little or no comprehension of words.N/A (e.g., deaf)7. Does your child smile in response to your smile?show examplesSmiles immediately in response to a smile from a caregiver.Delayed or partial smile in response to a smile from a caregiver.Smile in response to an action by a caregiver (i.e. silly dance), but not in response to the actual smile of the caregiver.Does not smile in response to actions or the smile of a caregiver.8. Does your child engage in imaginative or pretend play? Answer according to the most abnormal behavior your child has exhibited. For children 10 years old or older, answer according to how the child played between the ages of 4 and 5show examplesPretend Play examples.Does s/he play with toy tea sets or dolls or action figures or cars?Does s/he pretent to drink the tea/kiss the stuffed animal?Has s/he ever given the doll a drink or the action figure a ride in the car?Has s/he ever used the doll/action figure as the initiator-so that the doll pours and serves the tea or the action figure walks to the car and gets in it?Does s/he ever talk to her/his dolls or animals?Does s/he ever make them talk or make noises?Has s/he ever made up a sort of story or sequence?Does this type of play vary from day to day?Variety of pretend play, including use of toys to engage in play activity.Some pretend play, including pretending with toys, but limited in variety or frequency.Occasional pretending or highly repetitive pretend play, or only play that has been taught by others.No pretend play.N/A.9. Does your child play pretend games when with a peer? Do they understand each other when playing? Answer according to the most abnormal behavior your child has exhibited. For children 10 years or older, answer according to how she played between ages 4 and 5show examplesDoes s/he ever take the lead in the play activity? Or does s/he mostly follow the other person's ideas?Imaginative, cooperative play with other children in which your child leads and follows another child in pretend activities.Some participation in pretend play with another child, but not completely back-and-forth, or pretending is limited in variety.Some play with other children, but little or no pretending.No play with other children or no pretend play even on own.N/A.10. Does your child like to be touched or held?show examplesNo.Resolved.Mild.Moderate.Severe.

Detecting autism with short video clipsFromdennis: July 14, 2011We have conducted a pilot study to demonstrate that with high accuracy and efficiency we can detect autism in short, 2-5 minute video clips. Clickto learn more, share your thoughts, and hopefully share your videos.

http://autworks.hms.harvard.edu/Parte inferior do formulrioParte inferior do formulrio