Welcome to the SPARK- SMA Study!
We’re so glad you’re here!
Introduction
Speech Production and Receptive Language in Kids with Spinal Muscular Atrophy (SPARK-SMA) is designed to understand how treatments for Spinal Muscular Atrophy (SMA) approved by the Food and Drug Administration (FDA) impact speech and communication development in children with SMA.
This will help us better understand early indicators of which kids with SMA who have received disease modifying therapies will benefit from speech and language therapy and those who will not.
SPARK- SMA is funded by the National Institutes of Health (F31DC023123-01).
Goals
We know that every child’s experience with SMA and its treatments is unique. Our goal is to capture the full range of communication abilities, from verbal speech to Augmentative and Alternative Communication (AAC), to better understand each child’s individual strengths, challenges, and communication style.
Participation
We are recruiting children who have a medical diagnosis of SMA, have received an FDA-approved disease-modifying therapy, speak English, and are between 2 and 17 years of age.
Participation will include:
- A 30-minute phone or Zoom interview with a study team member to answer questions about your child’s development and current communication.
- A 3-hour, in-person visit at the Waisman Center with a licensed Speech-Language Pathologist.
- A short online questionnaire about your child’s development.
Consent will be requested to access your child’s medical records for information relevant to your child’s SMA diagnosis and disease modifying therapy administration.
Thanks to new therapies, children with SMA are living longer and experiencing more than ever before! By enrolling in this study, you are helping us examine speech development in SMA after disease-modifying therapies for the very first time. This will make a real difference for other children, families, and healthcare providers.
(FAQ) Frequently Asked Questions
Children who have a medical diagnosis of SMA, have received an FDA-approved disease-modifying therapy, speak English, and are between 2 and 17 years of age are eligible to participate in this study.
You will be asked to complete the following to participate in the study:
- A 30-minute phone or Zoom interview with a study team member to answer questions about your child’s development and current communication.
- A 3-hour, in-person visit at the Waisman Center with a licensed Speech-Language Pathologist.
Activities include:
- Play with a caregiver or parent
- Repeating words and sentences
- A hearing screening
- Standardized speech and language assessments
- A short online questionnaire about your child’s development
Consent will be requested to access your childs medical records for critical information including SMA diagnosis adn type, disease modifyin therpay recieved and adminstration date, and results form their earliest and most recent physical abilities assesment.
Yes! Families with receive $50 for participating in the study and your child will be able to select a small toy (valued $15 or less).
You will also receive a brief clinical summary of your child’s performance on all standardized assessments after the session. If your child scores below normal limits on any of our assessments, you will also receive recommendations and referral sources.
We schedule as many breaks as needed and can split the visit into two shorter sessions if preferred. If visits are split, families receive the $50 honorarium at the completion of the second visit.
Yes. Our testing rooms are fully wheelchair accessible, and we routinely accommodate medical equipment and extra caregivers in our testing space.
Email SMASpeech@waisman.wisc.edu or call (608) 263-5822—we’re happy to talk through your questions.
Yes! Please contact the study team to coordinate sibling scheduling.
Yes! We want to understand the full range of communication outcomes among children with SMA who have received FDA-approved therapy, that includes children with typically developing speech and language development.
Absolutely! We know that children with SMA communicate many ways including AAC, gestures, or body language. We are interested in capturing every child’s unique voice in our study!
All information is confidential and stored securely following University of Wisconsin–Madison and federal research regulations. Only members of the study team will have access to your child’s information, and all data will be de-identified, meaning we will use a unique code, instead of your child’s name.
This study is approved by the UW-Madison Institutional Review Board (IRB #2018-0580).
To learn more about what this means and how research participants are protected, watch this short video.
You can also contact the study team directly:
📧 SMASpeech@waisman.wisc.edu
📞 (608) 263-5822
Researchers
Sydney Jensen
Speech-Language Pathologist & Doctoral Candidate, UW-Madison
Sydney first began working with children with SMA as a speech-language pathologist at the Communication Aids and Systems Clinic at the Waisman Center, where she supported families in obtaining and implementing augmentative and alternative communication devices. Currently, Sydney collaborates with the Pediatric Neuromuscular Disorders Clinic at American Family Children’s Hospital and has witnessed firsthand the remarkable advances in SMA treatment and care that are redefining communication abilities in children with SMA. This study is Sydney’s dissertation project, and she will lead all study visits. She is excited to meet you and your family!
Dr. Katherine Hustad
Principal Investigator, Waisman Center & Professor, UW-Madison
Katherine Hustad is a professor in the Department of Communication Sciences and Disorders at the University of Wisconsin–Madison and director of the Wisconsin Intelligibility, Speech, and Communication (WISC) Lab. She is a renowned expert in pediatric motor speech disorders and has devoted her career to understanding how children with cerebral palsy and typically developing children develop speech and communication skills. Through her more than 20-year longitudinal research program, Dr. Hustad has advanced early diagnosis, improved intervention practices, and deepened our understanding of communication outcomes for children with and without motor speech disorders. Dr. Hustad is also Sydney’s PhD mentor and will supervise the project.
Dr. Jennifer Kwon
Director, Neuromuscular Program, UW–American Family Children’s Hospital University of Wisconsin School of Medicine and Public Health
Jennifer Kwon is a pediatric neurologist and director of the Pediatric Neuromuscular Disorders Clinic at American Family Children’s Hospital. Dr. Kwon has dedicated her career to advancing care and treatment for children with SMA. She played a pivotal role in statewide newborn screening efforts that expanded early access to disease-modifying therapies and contributed to many of the early clinical trials that shaped today’s standard of care. She is deeply committed to improving outcomes and quality of life for children with SMA and their families. Dr. Kwon is a consultant on this project, sharing her expertise on SMA and disease-modifying therapies and assisting with study recruitment.