Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: <it>charting the territory</it>

• Main Authors: Davies Betty (Author), Cadell Susan (Author), Brant Rollin (Author), Steele Rose (Author), Siden Harold (Author), Straatman Lynn (Author), Widger Kimberley (Author), Andrews Gail S (Author)
• Format: Book
• Published: BMC, 2010-09-01T00:00:00Z.
• Subjects: article
• Online Access: Connect to this object online.

<p>Abstract</p> <p>Background</p> <p>Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the c...