Results
Research > Genetics
CRISPR Gene Therapy for Rare Pediatric Disorders: What Families Need to Know
...right now, including the research centers, clinical trials,...centers, clinical trials, and specialized expertise...conditions move from "in development" to "available" over the...infrastructure exists and what questions to ask...announcement. What CRISPR Does and What It Doesn't Fix. CRISPR...at a specific location and either removes a faulty...
Research > Genetics
Chromosomal Microarray vs. Whole Genome Sequencing: Which Genetic Test Is Right for Your Child?
...find, what your insurance will cover, and how much uncertainty you can live with...or duplicated. It catches deletions and duplications as small as 50,000 base...Angelman syndrome when a child has autism, developmental delays, or unexplained intellectual...It's the most comprehensive option and catches everything WES does plus mutations...
Research > Drug Development
Should Your Child Participate in a Clinical Trial? A Parent's Decision Framework
...consent form that's thirty pages long, and a decision to make. You want to do...being asked to enroll your child in research you don't fully understand, for a drug...decision. What Phase Is the Trial, and What Does That Mean? Trials move through...figuring out dosing, side effects, and whether the drug is tolerated. This...
Research > Drug Development
Fragile X Drug Trials: The First Real Breakthroughs and What They Mean for Families
...following Fragile X drug research for any length of time,...right biological pathway, and all three failed in human...human trials between 2009 and 2015. Families got very...Zatolmilast matters so much, and why I think it's worth...15 years. That matters, and families who've been waiting...missing protein (FMRP), and without that protein, a...
Global Insights > Healthcare
The Healthcare Transition at 21: How to Prepare Your Child (and Yourself) for the Shift to Adult Care
...child turns 21 and loses their pediatrician....that follows. Research from Harvard,...Harvard, the NIH, and the Agency for...for Healthcare Research and Quality documents...Healthcare Research and Quality documents...physically active, and they die younger....Got Transition and MACPAC. The primary...that works, and what to do when...doctors knew what developmental milestones...population, and how to adjust...
Therapies > Other
Alternative and Complementary Therapies for Special Needs Children: What the Research Says
...hippotherapy and art therapy...art therapy and wonder if...Alternative and complementary...credentialing, and what research...and what research shows for...challenges, and other developmental...and other developmental differences....Levels. Not all research carries equal...placebo, natural development, or other...studies, and observational...observational research. These explore...shows promise and is worth larger-scale...
Research > Genetics
Understanding Genetic Testing for Autism, Cerebral Palsy, and Developmental Disabilities: A Parent's Guide
...palsy, global developmental delay. The...testing after a developmental diagnosis...conditions. And for many, the...what it costs, and when it's recommended....child's symptoms and developmental...symptoms and developmental pattern. It...conditions. And if a genetic...identified, siblings and future pregnancies...isn't clear, and 36-53% of unexplained...unexplained global developmental delay or intellectual...
Research > Funding
Where Research Dollars Go: Understanding Funding Gaps Across Disability Conditions
...diabetes and the volume...reflects where research dollars go,...dollars go, and understanding...Allocates Research Funding. The...institutes and centers. Each...priorities, and decision-making...process. Autism research receives approximately...applications, and grant applications...adulthood research. The rest...intervention, motor development, and pediatric...development, and pediatric...think of research funding as...
Research > Drug Development
The Drug Development Pipeline for Special Needs: What Parents Need to Know About How Treatments Go from Lab to FDA Approval
...entering Phase 2 trials, and you wonder if this...a drug sits in the development pipeline matters when...drug is safe enough and effective enough to...works. Preclinical Research: Before Human Testing...through preclinical research. This happens in the...happens in the lab and in animal models. Researchers...regulated by the FDA yet, and there's no formal review...
Research > Clinical Trials
How to Find and Evaluate Clinical Trials for Your Child's Disability
...approved treatment yet, but research is happening. Either way, you're...eligibility criteria look like, and how to distinguish a reputable...your child, where the major research is concentrated by condition,...concentrated by condition, and which questions to ask before...have narrow age bands tied to developmental stages: 2-5 years, 6-12 years....
News > Technology
The AAC Speech Delay Myth: What Parents Need to Know Before Starting Communication Devices
...take the brochure, and then you go home...then you go home and think: If she has...starting augmentative and alternative communication...communication early. And it makes perfect...wrong. What the Research Shows. The American...accelerates communication development. Children who start...communication gets results, and that motivation...both in device use and verbal output No...
Medical > Psychiatry
The Hidden Mental Health Crisis: Why Teenagers with Disabilities Need Psychiatric Care (And How to Access It)
...a wheelchair and an IEP that mostly...teenage stuff" and suggests waiting...won't pass. And it's not typical....experience depression and anxiety than...disabilities. The research is consistent:...never get it. And parents are left...mood swings, and clinical depression...More Common and Often Missed....face the same developmental stressors as...independence, and for some, knowledge...