research : disease studies
Genetic Analysis of Limb Malformation Disorders
Participant Consent Video
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Watch the entire video (MP4 files for QuickTime/iTunes)
Watch individual chapters
- Why is this research being done? Are there benefits of taking part?
- What is involved in the study? Standard research procedures, Health information, Medical records and photographs, DNA Collection
- Non-standard research procedures
- What are the risks of research procedures?
- Genetic analysis: What are we looking for and how will we try to find it?
- Types of genetic information we may find/If we identify changes that cause your condition
- Other changes we may find
- Data sharing/Sample sharing
- Risks of genetic analysis and data sharing
- What about confidentiality?
- How long will I be in the study? Are there any costs?
- What are the other options? What are my rights as a research participant? Whom do I call if I have questions or problems?