Following is a list of ongoing fragile X related research studies for which the investigators have requested we post an announcement. If you are interested in participating in one of these studies,
please contact the investigators directly. Please be aware that some studies may have concluded or may no longer be recruiting participants. (Note to researchers: If you are seeking funding from the NFXF please click here: Current RFAs)
We at the University of Chicago Medical Center are looking for adults over 18 years of age with a family history of Fragile X (Fragile X syndrome, Premature Ovarian Failure or FXTAS) to participate in a 45 interview about how families talk about Fragile X.
Information gained will be useful to develop better counseling guidelines for doctors taking care of families with Fragile X.
$25 Given as a Token of Our Appreciation for Your Time
If you are interested and in the Chicagoland-area, please contact Dr. Kruti Acharya to set up an interview at 773-834-4394.
Seeking Participants with a Diagnosis of Autism Spectrum Disorder or Fragile X Syndrome – April 2009
Improve Genetic Counseling for Fragile X Premutation Carriers - February 2009
Please Help Us Improve Genetic Counseling for Fragile X Premutation
Carriers
I am a graduate student in the Genetic Counseling Program at Brandeis
University in Waltham, Massachusetts. I am conducting a research study to
explore the perspective of fragile X premutation carriers. I hope this study
will help genetics professionals to better meet the needs of fragile X
premutation carriers.
Participation in this study is voluntary and involves completing an
anonymous online survey, which takes approximately 15-30 minutes to
complete. Participation is open to male and female fragile X premutation
carriers who are 18 years of age or older.
If you are interested in participating in this study, you can access the survey
by clicking on the following link or by pasting it into your browser. The
survey will be available until March 1, 2009.
Sincerely,
Danielle Metterville
MS Candidate, Genetic Counseling
Brandeis University
Email: dmetterv@brandeis.edu
PS: Depending on how your webmaster posts recruitment notices, I have also included the code to create a link on your website to the survey. To do so, copy the code below and then paste the code into the HTML of any webpage so that others can click the link and access the survey.
Safety, Tolerability and Efficacy Study of STX209 in Subjects With Fragile X Syndrome. Ages 12-40. December 2008
Investigating the language learning difficulties of boys who have fragile X syndrome and the ways in which autism symptoms might contribute to those difficulties. Ages 4-10. November 2008.
We are recruiting families for a longitudinal research project designed to investigate the language learning difficulties of boys who have fragile X syndrome and the ways in which autism symptoms might contribute to those difficulties. Boys with fragile X syndrome between 4 and 10 years of age are eligible to participate. Participation would require visiting the Waisman Center on the campus of the University of Wisconsin-Madison or the M.I.N.D. Institute of the University of California at Davis. The costs for eligible travel expenses, including hotel and airfare, will be covered by the project. Because the project is longitudinal, we will ask families to return for additional testing 1.5 years after their first visit. For more information and to learn if your son is eligible, contact Dr. Len Abbeduto (abbeduto@waisman.wisc.edu or 608-263-1737) or Susen Schroeder, M.A. (sschroeder@waisman.wisc.edu or 608-263-5145) or Emily Porter (ekporter@wisc.edu or 608-263-5145). This research is approved by a University of Wisconsin-Madison Institutional Review Board for the Protection of Human Participants.
Investigational Medicine to Treat Irritability in Fragile X Syndrome: Ages 6-40. - October 2008
"Investigational Medicine to Treat Irritability in Fragile X Syndrome."
Sponsor: Seaside Therapeutics Where: UNC Chapel Hill Department of Psychiatry
Chapel Hill, NC 27514
Principal Investigator: Linmarie Sikich, MD Contact info: Cheryl O. Alderman, aspire@unc.edu, 1-800-708-0048
For people with fragile X syndrome, between the ages of 6-40, must be willing to travel to UNC in Chapel Hill, NC (there is some money available for travel reimbursement). See
the attached flyer.
Health of parents raising a child with a disability: Affect, help-seeking, spirituality, and coping. - July-August 2008
Social Language Study Seeks Participants: boys 6 to 14 and girls 3 to 14 - December 2007
Social Language Study Seeks Participants
The Carolina Communication Project at the Frank Porter Graham Child Development Institute at the University of North Carolina at Chapel Hill is studying social communication skills in children with fragile X syndrome. The information from this study will be useful for developing language interventions.
We are recruiting children with fragile X syndrome: Boys who are 6 to 14 years of age and girls who are 3 to 14 years of age. As a participant in the study, your child will receive speech, language and developmental assessments once a year for three years. After each visit you will receive $40.00 for your participation and a short summary of our findings.
The study is funded by the NICHD and has been approved by the Committee on the Protection of the Rights of Human Subjects at the University of North Carolina at Chapel Hill. Dr. Joanne Roberts is the principal investigator.
If you are interested in helping with this exciting project, or have any questions, please contact Anne Edwards (Project Coordinator) at Edwards@mail.fpg.unc.edu or call toll-free at 1-877-696-5797.
Louisiana State University, Autism Spectrum Disorders Study - September, 2007
U.C. Davis M.I.N.D. Institute Study of Young Men with the Fragile X Premutation - July 2007
This study focuses on cognition and emotion in men with the fragile X premutation between 18 and 45 years of age.
We also will be enrolling brothers of these men, without the premutation, if they are available. Participation includes 2 full days at the Fragile X Research and Treatment Center at the University of California Davis M.I.N.D. Institute in Sacramento, CA. Travel and lodging expenses are covered. We can provide fragile X DNA testing for some men who may be eligible, either as premutation carriers or as brothers without the premutation. We also provide $100 compensation for participation in the study. David Hessl, Ph.D. and Susan Rivera, Ph.D. are the principal investigators. For more information and to complete a phone screening interview, please contact Vivien Narcisa at 916-703-0292.
Anxiety, Behavior and Social Interaction Study: Long Island, NY - April 2007
Does your child with Fragile X syndrome have anxiety in new situations or interacting with people s/he does not know? Does your child have behavior problems in these situations?
If so, we would like to invite you to participate in a study about problem behavior of children with developmental disabilities. Research has shown that individuals with certain diagnoses find some situations more difficult to deal with than other situations. For example, individuals with Fragile X syndrome have difficulty talking to people they don't know. The goal of this study is to see if individuals with different diagnoses are more likely to show problem behavior (e.g., tantrums, noncompliance) in situations in which they have difficulty. This study has two phases. In phase 1, we will identify which situations are associated with problem behavior for your child. We will observe your child in the situations we expect to be associated with problem behavior. These situations will be variations of situations your child typically encounters during the day. In phase 2, we will develop strategies to reduce/eliminate problem behavior in those identified situations. The intervention plan will involve changing the environment in the problematic situations and/or teaching your child new skills.
This study is being conducted at the State University of New York at Stony Brook under the supervision of Edward G. Carr, Ph.D., BCBA, FAAIDD. Participating families must live on Long Island. If you are interested in learning more about this study please contact Megan Robinson, MA at (631) 682-0643 or megan.robinson@sunysb.edu
Medication Study: aripiprazole - February 2007
RESEARCH OPPORTUNITY Fragile X Syndrome Research Study
The Section of Child & Adolescent Psychiatry at Indiana University School of Medicine is conducting a study designed to study the effects of aripiprazole in individuals with Fragile X syndrome. Participants must be children, adolescents, and young adults between the ages of 6 and 35 with Fragile X syndrome as well as behavioral difficulties such as irritability, tantrums, aggression and self-injurious behavior. Participants must have no major medical illnesses and not have had a previous adequate trial of aripiprazole. Participants will receive study medication at no charge. For additional information about study requirements and study procedures, please call Marianna at (317) 278-6253. IRB APPROVED October 17, 2006
Preimplantation Genetic Diagnosis for Single Gene Disorders: How are Patients Gaining Health Insurance Reimbursement? - January 2007
Early Childhood Research at Stanford University - September 2005
The Behavioral Neurogenetics Research Center at Stanford University is conducting a study exploring the complex relationships among brain growth, developmental profiles, and environmental influences in young boys with developmental disabilities We currently are seeking participants for this research who meet the following criteria: Male toddlers and preschoolers (18 - 48 months) with developmental delay of unknown origin, fragile X syndrome, or typical development. Individuals with a developmental disability of unknown origin are especially needed. The goal of the study is to uncover information which can lead to more effective interventions or treatment. Participants receive a report of the research testing and an honorarium of $200. Participation in the early childhood study includes a 2 day evaluation, including a behavioral and cognitive assessment, a brain MRI (structural only) and a brief neurodevelopmental exam. MRI scans are safe, non-invasive and do not use radiation. For more information, contact the BNRC toll free hotline at 888-411-2672 or email vattuone@stanford.edu. http://spnl.stanford.edu
Women with premature ovarian failure - August 2005
UCLA RESEARCH ON EDUCATIONAL ISSUES: Students with Fragile X Syndrome - June 2005
The UCLA Behavioral-Genetics Clinic along with the UCLA Lili Claire Family Resource Center is conducting a needs assessment of teachers and parents of children with specific genetic disorders. We are seeking your participation in answering our research questionnaire about your child's educational strengths and limitations, behavior concerns, and the degree to which your child's school program is tailored to his/her specific needs. The questionnaire should take no more than 30-40 minutes to complete.
For more information or to participate in the study, please contact:
Rebecca Cox, Ph.D.
Technical Support Coordinator
Rm. 58-218E
760 Westwood Blvd.
Los Angeles, CA 90024
Or call 310-794-9516 (Lili Claire Family Resource Center)
What is a good age to start talking to your children about their genetic risk and when should carrier testing be offered? - October 2004 (funded by the NFXF)
Math Skills Development Project - Girls with Fragile X -
August 1997 to Present
Math Skills Development Project - Girls with Fragile X
This project is designed to help us understand the development of cognitive and academic skills in young children. One component of the project involves following the development of these skills in young girls with the Fragile X full mutation. The project is a longitudinal one, meaning that each participant will be evaluated individually once per year, over the course of several years. We are currently recruiting girls who are either in Kindergarten, First, Second, or Third grade, and who have the Fragile X full mutation.
Participation will involve several hours of psychological and academic achievement testing, over one to two days. The testing will include measures of reading, mathematics, spatial reasoning, and other problem solving skills. Parents will receive a summary of their daughter's test performance following each evaluation, if requested. The testing will occur at the Kennedy Krieger Institute in Baltimore, Maryland, or elsewhere, depending on your geographic region of residence. There is no charge to you for any of this testing.
If you desire more information, or if you wish to enroll your daughter in this project, please contact Dr. Michèle Mazzocco, Principal Investigator of this research project, at (443) 923-4125, or Anne Henry, Research Assistant, at (443) 923-4121. If you prefer, you may also e-mail us at henrya@kennedykrieger.org There are no significant risks to participation, nor any direct medical benefits. Minor risks include finding some of the activities too challenging or too easy.
Thank you for your interest and support in this research.
Longitudinal Research Project to Investigate Language and Communication Difficulties of Children and Adolescents with Fragile X - October 2004
We are recruiting families for a longitudinal research project designed to investigate the language and communication difficulties of children and adolescents who have fragile X syndrome. Children and adolescents with fragile X syndrome who are between the ages of 10 and 15 years are eligible to participate. Both males and females are needed. Participation would require visiting the Waisman Center on the campus of the University of Wisconsin-Madison. Families can be reimbursed for eligible travel expenses, including hotel and airfare, if necessary. Because the project is longitudinal, we will ask families to return for additional testing at yearly intervals for four years. For more information and to learn if your child is eligible, contact Dr. Len Abbeduto (abbeduto@waisman.wisc.ed or 608-263-1737) or Susen Schroeder, M.A.(sschroeder@waisman.wisc.edu or 608-263-5145) for more information. This research is approved by a University of Wisconsin-Madison Institutional Review Board for the Protection of Human Participants. We will begin to see families in late November of 2004 and well into next year for their first visit.
A Study Of Genes and Behavior in Fragile X for Boys Ages 3 to 10 Years Old -
March 2004
FXTAS (Fragile X-associated Tremor Ataxia Syndrome) Treatment Study - November 2003
FXTAS (Fragile X-associated Tremor Ataxia Syndrome) Treatment Study. Dr. Deborah Hall and Dr. Maureen Leehey are neurologists at the University of Colorado Health Sciences Center in Denver. They specialize in movement disorders and study FXTAS and Parkinson's Disease. The Fragile X Tremor Ataxia syndrome (FXTAS) is a disorder found in some fragile X carriers over the age of 50. These individuals develop progressive neurological problems including tremor, balance difficulty, parkinsonism, and memory problems. Drs Hall and Leehey are conducting a series of studies of individuals with FXTAS to determine which medications will be helpful in treating symptoms of the disorder. The information gathered in the initial survey of patients with FXTAS will be used to design treatment trials later. If you have questions about the study, please call Dr. Hall at (303)315-6456.
Premutation Carriers Over 50 Years of Age in the Rocky Mountain Area - October, 2003
Premutation Carriers Over 50 Years of Age in the Rocky Mountain Area
FRAGILE X RESEARCH STUDY IN THE ROCKY MOUNTAIN AREA
Maureen Leehey, MD, a movement disorders neurologist and associate professor of neurology at the University Of Colorado School Of Medicine in Denver, is the principal investigator of a new study related to Fragile X syndrome. The study is being done in collaboration with Randi and Paul Hagerman's group in California, Elizabeth Berry-Kravitz's group in Chicago, and Ann Reynolds, at the Child Development Unit/Fragile X Clinic in Denver. It is funded by the National Institutes of Health.
We have recently found that some Fragile X premutation carriers develop progressive neurological problems after about age 50. These include tremor, balance difficulty, Parkinsonism, and memory problems. In this study, we intend to determine why this happens, what these neurological problems are more specifically, and how often they occur. We plan to use this information in the future to develop treatment studies.
To do this, we will evaluate Fragile X premutation carriers over 50 years of age. We will also evaluate persons over 50 that do not have a change in their FMR1 gene (often a spouse) as a "normal control" group for comparison. Even if you are not 50, we are interested in other family members, like your parents, who would be eligible. We can travel to your home if you live in Colorado or an adjoining state.
During the evaluation, you would:
Answer questions about your health and your family's medical history
Meet with a neurologist
Complete a videotaped routine neurological examination
Complete paper and pencil evaluations of your neurological and psychological state
Have your blood drawn for analysis of your FMR1 gene
Participation is voluntary. You may quit the study at any time. If you decline to participate, or if you quit during the study, it will not affect any treatment or benefits received by you or your family. Your identity would be protected in this study.
Your participation in this study would be valuable and appreciated. Please call Cathlin Rice, Study Coordinator, at 303-315-2389 if you are interested.
Thank you and we look forward to hearing from you,
Maureen Leehey, MD Ann Reynolds, MD
Associate Professor of NeurologyAssistant Professor of Pediatrics
Director, Movement Disorders Program,Child Developmental Unit,
University of Colorado Health Sciences CenterThe Children's Hospital
Deborah Hall, MD Cathlin Rice, MS
Neurology FellowGenetic Counselor
Movement Disorders Program,Study Coordinator (Prevalence and Characteristics
University of Colorado Health Sciences Centerof Fragile X-associated Tremor-Ataxia syndrome)
To Identify and Describe Medical Issues in Children with Autism, Fragile X Syndrome, Developmental Delay and Typical Development - October, 2003
To Identify and Describe Medical Issues in Children with Autism, Fragile X Syndrome, Developmental Delay and Typical Development
RESEARCH STUDY
Primary Investigator: Ann Reynolds, MD, COMIRB Protocol #02-581
PURPOSE: TO IDENTIFY AND DESCRIBE MEDICAL ISSUES IN CHILDREN WITH AUTISM, FRAGILE X SYNDROME, DEVELOPMENTAL DELAY AND TYPICAL DEVELOPMENT
WHO: Children 4 to 7 years with autism, fragile X syndrome, developmental delay or typical development
WHAT: Involves sleep and family history questionnaires, and diet and stool diaries
The study is for research purposes only and does not provide benefits directly for the child or family.
If you are interested, please call:
Dr. Ann Reynolds at 303-861-6619
Physiology of Emotion and Stress In Children and Adolescents - August 2003
U.S. Government Funds Three Fragile X Research Centers - March 2003
U.S. Government Funds Three Fragile X Research Centers
In 2000 the members and friends of the National Fragile X Foundation participated in a broad coalition which was responsible for the passage of the Children's Health Act of 2000. This groundbreaking piece of federal legislation clearly established children's health as a national priority in the United States now and for all future generations. The following year, through the continued hard work and dedication of the fragile X community, the dollars to fund these centers were appropriated by Congress. We are proud to now announce that The National Institutes of Health have selected and funded the three Fragile X Treatment and Research Centers authorized by the Children's Health Act of 2000. They are all collaborative programs as NIH wanted them to be connected to existing NICHD Mental Retardation and Developmental Disabilities Research Centers (MRDDRC) and to avoid spending scarce resources on bricks and mortar or setting up new administrative systems. Funding for the first year will total $3,248,780.
The selected collaborations are University of Washington, Dr. Charles Laird FXSRC Director, and Dr. Randi Hagerman at the MIND Institute at University of California (Davis); University of North Carolina with Dr. Don Bailey as FXSRC Director, in affiliation with the MRDDRC at University of Kansas; and Baylor College of Medicine in Texas with Dr. David Nelson as FXSRC Director in collaboration with Drs. Steve Warren and Stephanie Sherman at Emory in Atlanta. In addition to the Centers NIH awarded individual grants to Dr. Mark Bear at Brown University and to Dr. Linda Crnic at University of Colorado where she is MRDDRC Director. Congratulations all!
The Foundation is excited by the news and is pleased to note that Drs. Hagerman, Bailey, Nelson and Warren are all Scientific and Advisory Committee members for the National Fragile X Foundation.
This is a significant step forward for the fragile X community and the National Fragile X Foundation is looking forward to working with and supporting the work of these three new centers.
John Harrigan
President
National Fragile X Foundation
Jeffrey Cohen
Public Policy Chair
National Fragile X Foundation
European project on X-linked mental retardation - January 2003
Dear Parents,
First, I would like to wish you and your family a very happy New Year.
Since my E-mail of June 24, 2002, the situation concerning a possible European project on X-linked mental retardation has evolved considerably and very positively.
1. The Expression of Interest entitled "European Institute for Genetics, physiopathology and therapeutics of X-linked mental retardation" has been favorably assessed by independent experts and the European Commission's services last July. It has been retained as a topic to be included in the research work programme of the thematic priority area "Life Sciences, Genomics and Biotechnology for Health" of the 6th Framework Programme (2002-2006) (see the website address http://www.cordis.lu/fp6/lifescihealth.htm ). The results have been published in the CORDIS website last September.
2. A second and more important step was the publication of the work programme on the CORDIS website last December. The English, French and German versions can be found as compressed files at the website address: http://fp6.cordis.lu/fp6/call_details.cfm?CALL_ID=4 . I have decompressed these three files, which are now attached to this E-mail as .pdf files. The translation into the other European Union languages will be downloaded soon on this website.
In the table of content, p.2 of the English version of the work programme, in Section 1.3-i)-a), there is the item: "multidisciplinary functional genomics approaches to basic biological processes". This item is developed in pp. 17 and 18. The last topic for second call in p. 18 is called "large epidemiological studies of X-linked syndromes". This is just to show that "X-linked syndromes" are included in the work programme. However, this topic is in the second call with a deadline in November 2003 (see p. 40). This second call shoud be launched in the Spring of 2003. To be positive, we can be happy that the "X-linked syndromes" have been retained in the second call of the work programme, because it will leave time to the researchers to fine tune the topic with the Commission by adding words like e.g. "mental retardation" and to prepare a very good proposal. From a practical point of view, we could expect to have a European project on X-linked mental retardation (including the Fragile-X syndrome) starting in the Spring of 2004, if it is accepted for funding by the European Commission.
3. You are well aware that 2003 is the European year of people with disabilities. You can find all relevant information at the following website: http://www.eypd2003.org/eypd/index.jsp . It is now the best opportunity for you to make the citizens of your countries aware of the problems linked to the Fragile-X syndrome and to lobby the social aid responsibles to try to get from them the maximum help for your children and relatives, who have affected by this syndrome.
Best regards,
Michel Hugon Vice-Chairman of "Association Syndrome X-fragile"
Female Siblings Needed for In-home Fragile X Research Study - March 2003
Female Siblings Needed for In-home Fragile X Research Study
The Behavioral Neurogenetics Research Center (BNRC) at Stanford University is looking for families that meet the following criteria: Have a daughter affected with fragile X syndrome; Have a second daughter who is not affected with the mutation. Both daughters must be between the ages of 6-14 years and be full siblings. We will visit families in their homes to conduct a number of behavioral and cognitive assessments at two time points separated by approximately 2 years. We will also collect saliva samples from the children at regular intervals during each visit and conduct a brief assessment of the child's heart rate during a typical social situation. The evaluation takes place over 1 1/2 days and families receive cognitive and behavioral reports as well as a small stipend.
The major emphasis of this new longitudinal study is to examine the interaction between key cognitive, behavioral, hormonal, genetic and environmental variables that can affect the developmental outcomes of children with fragile X syndrome. The information we collect will allow us to explore the answers to many important questions. First, it will provide us with a more comprehensive description of children with fragile X, their siblings, and their parents. Second, it will allow us to better understand the impact of biological and environmental factors on the intellectual abilities and behaviors of children with fragile X. This second aim is especially important because it will lead to a better understanding of the causes of individual differences in children with fragile X. Also, it will ultimately allow us to identify the most effective therapies and educational programs for individual children.
The study is a follow-on and refinement of a study conducted by BNRC which explored factors influencing developmental outcomes in children with fragile X. The results of the previous study are described in an article titled Genes, School and Family which can be found in Resources-fX files on the NFXF website at www.FragileX.org . The design of the previous study allowed us to identify factors associated with the outcomes of children with fragile X. In this new longitudinal study, we will be able to identify specific causes of the outcomes.
If you are interested in participating in this research study or would like further information, please call Ellen Van Stone at Stanford BNRC, toll-free 1-888 411-2672.
Overview of Fragile X Research at Stanford University - September 2002
The Neurodevelopmental Disorders Research Center at the University of North Carolina at Chapel Hill launches Fragile X Research Registry! - January 2002
The Neurodevelopmental Disorders Research Center at the University of North Carolina at Chapel Hill launches Fragile X Research Registry!
A Research Registry has been launched by the University of North Carolina's Neurodevelopmental Disorders Research Center. This Registry links families who have a child with FXS to researchers recruiting study participants. Please visit ~http://www.fpg.unc.edu/~FXS_Public/Welcome.~cfm
Female Carriers of the Fragile X Premutation are Wanted for a Research Study on the Menstrual Cycle - September 2002
Female Carriers of the Fragile X Premutation are Wanted for a Research Study on the Menstrual Cycle.
The Reproductive Endocrine Unit at the Massachusetts General Hospital seeks female carriers of the Fragile X premutation for a research study to examine the menstrual cycle. Mothers of children affected with Fragile X and their sisters who are Fragile X carriers are invited to participate. The study will help determine whether there are changes in the menstrual cycle hormones in women who carry the Fragile X premutation. The study also involves the option of participating in neurological and psychological testing to examine thinking and personality traits. Women should be aged 18-50 yrs. Up to $50 stipend. Call Patty at 617-726-5387.
Participants Needed for a New Communication Study in North Carolina and Nearby States - February 2002
Participants Needed for a New Communication Study in North Carolina and Nearby States
A new study is looking at the speech and language development of young boys (between 3 and 13 years of age) with fragile X syndrome. It is being done at the Frank Porter Graham Child Development Institute (FPG) at the University of North Carolina at Chapel Hill. We will address questions such as, How does speech and language change as children get older? and What factors affect language development and the clearness of speech? If your child is between 3 and 8 years of age, we will visit your home or your child's school once a year for five years. If your child is between 8 and 13 years of age, we will visit your home or your child's school once and ask you to visit the Frank Porter Graham Child Development Institute once for a hearing test. We will cover all of your expenses to and from FPG. During each visit, we will interact with your child to learn about his speech and language skills, and you will have a chance to discuss your child's communication skills. After each visit, you will receive a written report and a small financial compensation for your child's participation. We are interest in recruiting families who live within 400 miles of central North Carolina. If you are interested in participating or have questions about the study, please call the Project Coordinator, Kathleen Anderson, toll-free 1-877-696-5797 or visit our web site at www.carolinacommunicationproject.org. Thank you in advance for your support.
Request for Participants in Cognition and Literacy Research Ages 10-35 - February 2002
Request for Participants in Cognition and Literacy Research Ages 10-35.
PARENTS! We are looking for individuals in the 10 to 35 year-old age range with fragile X syndrome to be participants in a study researching cognition and literacy in this population. In this NIH-funded study your child will work through several memory measures, reading measures, and fun computer tasks.
Your child should use spoken language as the primary means of communication and know basic shapes and colors. Our protocol lasts almost three hours, but there are many breaks scheduled. If you are willing to travel to Madison, Wisconsin, you will receive prizes for your child, gas mileage reimbursement, and free hotel accommodations. Please contact Dr. Mina C. Johnson-Glenberg at johnsonglen@waisman.wisc.edu . Or phone 608/262-6768.
Mothers of Children with Fragile X are Being Sought for a Research Study on Menstrual Cycles - January 2002
Mothers of Children with Fragile X are Being Sought for a Research Study on Menstrual Cycles.
Researchers at Magee-Womens Hospital of UPMC Health System are currently enrolling women who have children with Fragile X Syndrome for a research study on menstrual cycles. Mothers of children with Fragile X Syndrome and their sisters who are Fragile X carriers may be eligible to participate. The study will help find out if there are changes in menstrual cycle hormones in women with the Fragile X premutation. Women ages 18-50 years are eligible. Participation may last from 2 to 4 months. You may receive up to $50 for your participation. Please call Tammy at 412-641-6095 for details.
Study Seeking Mothers of Children with Fragile X Syndrome - January 2002
Study Seeking Mothers of Children with Fragile X Syndrome
The Carolina Fragile X Project at the University of North Carolina recently received funding to learn more about the positive aspects of life with a child with FXS, as well as potentially stressful factors. We hope to enroll 25-30 mothers whose children are between the ages of 1 and 5 years. We would like to observe daily interactions in the home for approximately an hour, followed by a brief interview. We would also like to complete assessments of both the mother and the child. We are interested in recruiting families in the NC, SC, GA, MD, or VA. A summary report of the assessments as well as a stipend of $25 will be paid to the families for participation. If you are interested in learning more about this study please call Anne Wheeler or Deborah Hatton at 1-800-351-4603, or send an email message to wheeler@mail.fpg.unc.edu.
UCLA Study of Boys, Ages 8-17, and Their Reaction To Sound - October 2001 to present
Request for Participants in NICHD funded Study - April 2001
Request for Participants in NICHD funded Study by University of Colorado Health Sciences Center and the University of Denver
The University of Colorado Health Sciences Center and the University of Denver currently have a number of approved studies that provide research opportunities
for persons of all ages. These studies are all focused on helping us understand basic brain and behavioral processes in various developmental disabilities. Two studies are currently recruiting for participants:
Developmental study of toddlers ages 18-36 months with fragile X, autism, Down syndrome, other developmental disabilities, siblings of children with autism and children without developmental disabilities. This study looks at a variety of developmental skills in early childhood, such as language development, play imitation, and problem solving. All participants receive reimbursement for their time. Dr. Sally Rogers; Principal Investigator, Project #96-587 Contact Cynthia Uhlhorn at 303-315-0122 for more information
Neuroimaging study of adults ages 18-45 years with autism, fragile X syndrome, Down syndrome, other developmental disabilities, or mental retardation and adults without developmental disabilities. This study uses brain wave recordings and magnetic resonance imaging (MRI) to understand how the brain processes sensory information. These are all noninvasive procedures and all participants receive reimbursement for their time. Dr. Martin Reite, Principal Investigator. Project #96-604. Contact Christy Pearson at 303-315-6524 for more information.
The Emory Study of Adult Learning (Atlanta, GA area) - January 2000 to Present
