program - American Academy for Cerebral Palsy and ...

Friday, October 18, 2013
7:00 am–7:50 am Breakfast Seminars 7-12
BRK 11 - ENGAGING IN RESEARCH WITH CHILDREN WITH NEURODEVELOPMENTAL DISABILITIES: CONSENT AND ASSENT
ISSUES
Authors: Elaine Stashinko, PhD; Alec Hoon, MD MPH; Leila Jamal, ScM
Level: Intermediate
Purpose: To critically review the federal guidelines on consent and assent of children and related bioethical issues including research assent
and dissent with intellectually challenged children, genetic consent issues and consideration for establishment of cell lines for future stem
cell research. The team will share knowledge and experiences related to emerging genetic issues and stimulate discussion related to clinical
research within this special population.
Target Audience: Interdisciplinary focus including physicians, nurses, therapists, and research coordinators conducting research with
children with neurodevelopmental disabilities and their families.
Course Summary: Informed consent is one of the primary ethical considerations in human subjects research. Research with children who
have neurodevelopmental disabilities may involve many complex issues including research with vulnerable populations, genetic testing
protocols and consent for establishment of cell lines. The team will share knowledge and experiences related to emerging genetic issues
and stimulate discussion related to clinical research and the consent/assent process within this special population.
Learning Objectives:
1) Identify the basic ethical principles that underlie informed consent in research with children.
2) Describe practical considerations in implementing the assent requirement in pediatric research.
3) Describe the risks associated with participating in genetic studies.
4) Outline potential conflicts related to the dual provider/researcher role in clinical research and implications for the consent process.
BRK 12 - SINGLE EVENT MULTILEVEL SURGERY IN SPASTIC DIPLEGIA: UNDERSTANDING THE EVIDENCE
Authors: H Kerr Graham, MD FRCS (Ed) FRACS; Pam Thomason, MPT
Level: Intermediate
Purpose: To discuss the need for continuous monitoring of clinical outcomes, how to perform a clinical audit of gait improvement surgery
and what is the perfect research design?
Target Audience: Physiotherapists, orthopaedic surgeons, rehabilitation physicians, researchers
Course Summary: New outcome tools including the Gait Profile Score (GPS), Movement Analysis Profile (MAP) and Gait Variable Scores
(GVS) have the potential to revolutionize outcomes research for any study where the aims of the intervention include improving gait
function. The authors have conducted and published the 1st RCT of Single Event Multilevel Surgery (SEMLS) (n=19) and more recently
published the outcomes at 5 year follow-up. The RCT outcomes in GPS terms, were similar to the outcomes of a large retrospective study of
SEMLS (n= 121) from the same unit. This intriguing finding will provide a basis for a presentation and discussion on how to perform a clinical
audit of SEMLS, the need for continuous monitoring of clinical outcomes and what the perfect research design might look like. Specifically,
does the RCT trump a prospective cohort study?
Learning Objectives:
1) To gain an understanding of the Gait Profile Score and how to interpret changes reported in research studies.
2) To gain knowledge of practical tools for monitoring and auditing outcomes of gait improvement surgery.
3) To gain an understanding of the strengths and weaknesses of different clinical trial designs for gait correction surgery.
4) To gain knowledge of the evidence for gait improvement surgery.
8:00 am–10:00 am General Session
Guest Lectureship
Annette Majnemer, OT, PhD, FCAHS
Outcome measures: What’s up with that?
European Academy of Childhood Disability
Allan Colver, MD
Quality of life and participation of children and young people with cerebral palsy
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American Academy for Cerebral Palsy and Developmental Medicine • PRELIMINARY PROGRAM