Charting the Territory - Study

Charting the Territory - Study
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Families needed for research study

Charting the Territory: Determining and Documenting Trajectories for Families Where a Child Has a Life-Threatening Condition

Looking for eligible families to participate in study led by Dr. Hal Siden and Dr. Rose Steele.

Rare Diseases, like many disorders, come in a spectrum. Some rare disease conditions are mild within childhood or the teenage years. Others are almost always life-threatening, and some have a wide range of severity.   We are recruiting children whose health is challenged and who are experiencing rapid declines to participate in a new research study. This study is funded by the Canadian Institute of Health Research (CIHR).

The Charting the Territory study will ask parents about their child to see how any symptoms are progressing over time. The study also invites families to answer questions about their quality of life. Researchers aim to improve understanding of how to best care for these vulnerable children in the future.

The study is enrolling families through BC Children's Hospital and Canuck Place Children's Hospices. Families whose child has a rare, progressive genetic, metabolic or neurological disease are eligible to participate.

For more information, please call our toll-free number at 1-877-945-2775 or visit the study website -