PARTICIPANT INFORMATION SHEET FOR LEGAL ACCEPTABLE

REPRESENTATIVE (LAR)
Clinical and investigative profile in Indian infants, children and adolescents aged 1 month
to 18 years with Muscular Dystrophy; a Muscle MRI, Skin biopsy and exome sequencing
based study
Aim of the study: We wish to evaluate the clinical and investigative profile in Indian infants,
children and adolescents aged 1 month to 18 years with Muscular Dystrophy; a Muscle MRI,
skin biopsy and exome sequencing based study
Principal Investigator: Dr. Sheffali Gulati, Professor and Head, Child Neurology division,
Department of Pediatrics, AIIMS, New Delhi
Purpose of the study: We wish to evaluate the clinical and investigative profile in Indian
infants, children and adolescents aged 1 month to 18 years with Muscular Dystrophy; a Muscle
MRI, skin biopsy and exome sequencing based study. Your child is suffering from muscular
dystrophy. During this study your child will undergo muscle biopsy and skin biopsy under effect
of sedative drugs with proper monitoring and also will undergo some blood investigations. . The
amount of blood withdrawn will be maximum up to three ml. For all these procedures, universal
precautions will be followed. Your child will also undergo MRI of the muscles with contrast
without any ssedation or radiation required for this procedure.
Benefits of participation: This study will help in identifying the clinical and investigative
profile in Indian infants, children and adolescents aged 1 month to 18 years with Muscular
Dystrophy
Risks of participation: All the patients will be monitored closely for development of any side
effects and provided treatment by the concerned hospital whenever required.
Participation and withdrawal from the study Your participation in this study is entirely
voluntary. You are free to withdraw from the study at any stage without any disadvantage to you
or your child.
Confidentiality of information: All information collected during the study will be kept
confidential and not shared with any third-party except the investigators and the parents.
Rights of participation: Participation in this study is voluntary. Refusal to participate will not
influence the care of your child in this hospital in any way. Though we would like all study
participants to complete the study, you are free to withdraw from the study at any time during the
course of the study.
If you have any problems or queries related to the conduct of the study, please contact any of the
following:

Dr. Sheffali Gulati

Professor and Head
Child neurology division,
Department of Pediatrics
All India Institute of Medical Sciences,
New Delhi.
Email: sheffaligulati@gmail.com
Phone no: 011-26594679