Ear, Nose, and Throat Diseases

Nervous System Diseases

Symptoms and General Pathology

All Conditions

Hearing Loss

Deafness

Peripheral Nervous System Diseases

* The primary oncology team will utilize the HPARSS to identify patients who are at risk for sensory deficits based on prior treatment. The HPARSS will constitute a file of that will contain eligible patients based upon their past treatment and their corresponding risk for a particular sensory deficit based upon that treatment. The patient and parent/guardian will be approached to participate in the study.
* Sensory deficit screening will be completed in the clinic and any screening results that indicate the need for referral for diagnostic testing or therapy will be scheduled by the primary treatment team staff.

-Providers will complete a survey regarding their views of the HPARSS. The Acceptability of Intervention Measure has 4 questions and the Feasibility of Intervention Measure has 4 questions.

Collaborators in the Informatics Research branch of the Institute of Informatics at the Washington University School of Medicine will identify CCS at risk for sensory deficits based upon their therapy exposure to generate the HPARSS document.

Highlighting Patients at Risk for Sensory Screening (HPARSS)

Robert J Hayashi, M.D.

Ashley Housten, OTD, MSCI

Caroline Mohrmann, PNP, Ph.D.

Thomas Kannampallil, Ph.D.

Patrick Lyons, M.D., MSc

Susan Hayashi, MA

Belinda Sinks, AUD

Anna Perlmutter, OTR/L

Feng Gao, M.D., Ph.D., MPH, MS

The overall goal of this study is to attempt to overcome the organizational barriers that impede prompt screening for at-risk sensory deficits in childhood cancer survivors (CCS). Using a cross sectional design study, collaborators in the Informatics Research branch of the Institute of Informatics at the Washington University School of Medicine will identify CCS at risk for sensory deficits based upon their therapy exposure to generate the highlighting patients at risk for sensory screening (HPARSS) document. The investigators will utilize the HPARSS that will link therapy related risks for sensory deficits to specific screening procedures prompting the primary oncology provider to implement screening, diagnostic testing, and therapy.

Patients At Risk for Sensory Screening (HPARSS) to Enhance Sensory Deficit Screening in Childhood Cancer Survivors

Highlighting Patients At Risk for Sensory Screening (HPARSS) to Enhance Sensory Deficit Screening in Childhood Cancer Survivors

-4 questions inquiring about the acceptability of HPARSS with answers ranging from completely disagree=1 to completely agree=5. The higher the score indicates higher acceptability of the HPARSS.

-4 questions inquiring about the feasibility of HPARSS with answers ranging from completely disagree=1 to completely agree=5. The higher the score indicates higher feasibility of the HPARSS.

St. Jude Children's Research Hospital

Washington University School of Medicine

Neoplasms

Diseases and Abnormalities at or Before Birth

Skin and Connective Tissue Diseases

Rare Diseases

Neurofibromatoses

Neurofibromatosis 1

Neurofibroma

Nerve Sheath Neoplasms

Neoplasms, Nerve Tissue

Neoplasms by Histologic Type

Syndrome

Neoplastic Syndromes, Hereditary

Neurocutaneous Syndromes

Heredodegenerative Disorders, Nervous System

Neurodegenerative Diseases

Genetic Diseases, Inborn

Neuromuscular Diseases

Nervous System Neoplasms

Peripheral Nervous System Neoplasms

Neurofibromatosis

Neurofibromatosis Type 1

One experimental group of NF1 children with 3 reading levels (1st grade, 2nd grade and 3rd grade). For this research they will pass :

* Neuropsychological evaluation
* Evaluation of the reading assistance technique

Neuropsychological evaluation (about 60 min) the same day realized by a student in Science Thesis under the responsibility of Prof. Yves Chaix and including:

* Process evaluation:
* Oculomotors: DEM test (5min)
* Visuo-attention: computerized STROOP (15min)
* Visuo-Perceptive: DTVP3 (30min)
* Phonological \& lexical: Exalang (10min)

Neuropsychological evaluation

Evaluation of the reading assistance technique (about 30 min) and comprising:

- Reading evaluation:Test lark (3min) Experimental task: 3-way help with reading (without help, color help and highlight help (25 min)

Evaluation of the reading assistance technique

Yves Chaix, MD

Isabelle Olivier, PhD

Isabelle Olivier, MD

The present project will therefore focus upon those processes related to visual attention and perceptual abilities and on their potential to explain reading behavior and reading problems in NF1. The main objective of this study is to clarify the specificity and heterogeneity of reading profiles and the causes of its disturbance in NF1. In particular, this project allow the investigators to study more precisely the relations between perceptual, oculomotor and visuo-attentional skills in NF1 children and reading abilities. In addition, a new oculomotor/perceptual reading aid for NF1 children will be evaluated. The investigators believe that the early intervention for perceptual, visuo-attentional or oculomotor problems may promote academic skill development.

Although some NF1 children manage in the end to exhibit "expert" reading behavior, a non-negligible number of them have real problems learning this skill. Today's estimates indicate that 30-60% of NF1 children suffer from written-language learning disorder. Studies of the effects of the neurocognitive deficit on academic performance are relatively rare, owing to the small size of the populations concerned. However, research is needed to develop effective rehabilitation programs. At the current time, most tools available to professionals are designed for the evaluation and remediation of child language problems, particularly difficulties related to the acquisition of meta-phonological skills. The findings from dyslexics and typically developing readers however suggest a strong relationship between reading ability and visual processing. The main goal of this study is to investigate the occurrence of perceptual, visuo-attentional and oculomotor deficits in NF1 children and their potential to explain reading behavior and reading problems in this population. The investigators hope to contribute to the process of clarifying the specificity and heterogeneity of reading profiles and the causes of its disturbance in NF1. The second objective of the study is to evaluate an oculomotor/perceptual reading aid for NF1 children; in particular, the idea of the training is to help the readers to land their saccades at the optimal viewing position1 (OVP) of each word (highlighting the letter at the OVP or putting it in color, so that the saccades they make would land near the centre of the word, at the OVP). Eye movement control during reading is a highly automated process; people are not aware of most of the saccades and fixations they make. This tool is a way to train children to control these subconscious saccades and fixations. Note that, our team has already demonstrated the usefulness of this reading aid for beginning readers. This project have important implications from a clinical perspective, by providing the opportunity to gain insight into the reading difficulties of NF1 children, in view of establishing thorough and accurate assessment procedures and proposing child-specific guidelines and remediation methods that take into account the particular processes affected. Providing a clearer picture of visuo-attentional and perceptual skills in children with NF1 would be of considerable clinical benefit, not least for supporting targeted clinical practices. Moreover, NF1 children could benefit from a new remediation tool that allow them to have feedback on their reading ability, and to read more easily, more rapidly, and with better comprehension. If appropriate interventions are implemented at an early age, academic skill development could be altered, preventing subtle learning difficulties from becoming more pronounced over time.

Vision, Attention and Reading in Neurofibromatosis Type 1 (NF1) Children

The visual process : Oculomotor Processes : Vertical,Horizontal Time with the Ratio with the Developmental Eye Movement Test (DEM test) : a standard of evaluation oculomotor in children with reading difficulties

The visual process : Visuo-perceptual process : it's a composite score : Composite score of perceptual treatment with pure visual perception score and visuo-motor integration with a Developmental Test of Visual Perception, 3rd (DTVP3) test is Visual perception development test

Visual-attentional process : reaction time (milli Sec) with the percentage of correct answers to the computerized Stroop to show that attention is a selective process and that it is very difficult to read and name colors at the same time

To evaluate language skills like phonological awareness with lexical stock Alouette Reading Test's aim is for the accuracy index and CTL speed index :The Alouette test is a reading test that evaluates the level of lexical decoding (automaticity). It consists of reading a standard text aloud and count the number of words read and errors in a given time

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization	Link
Patients At Risk for Sensory Screening (HPARSS) to Enhance Sensory Deficit Screening in Childhood Cancer Survivors	NCT05582551	Childhood Cance...	Highlighting Pa...	7 Years - 17 Years	Washington University School of Medicine
Vision, Attention and Reading in Neurofibromatosis Type 1 (NF1) Children	NCT03518710	Neurofibromatos...	Neuropsychologi... Evaluation of t...	7 Years - 9 Years	University Hospital, Toulouse

Spots Global Cancer Trial Database for vision

Every month we try and update this database with for vision cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Spots Global Cancer Trial Database for vision

Every month we try and update this database with for vision cancer trials from around the world to help patients and their families find trials that might be right for them. We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Every month we try and update this database with for vision cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.