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The International Pleuropulmonary Blastoma Registry
The International Pleuropulmonary Blastoma Registry
What Can Families Do?

Families face many difficult tasks when a child has cancer. They must try to deal with a barrage of scientific/medical information at a time when their emotions are exceptionally stressed and when they seem to have lost the ability to protect their child. They must respond to recommendations by the medical caregivers. They must deal with regular activities at home such as work and other children. The cancer center giving care may be far from home and the family members may be separated from each other. They sometimes face financial problems.

Families need help facing these complicated issues. They should not hesitate to enlist help from extended family members, employers, and non-profit agencies (such as cancer societies, which may help with transportation costs). Many books and other resources are available to help families facing the serious illness of a child.

Because of its rarity, less is known about PPB than about many pediatric cancers; thus families and caregivers face more unknowns. There are no easy answers to these difficulties. Information and detailed (and sometimes repeated) explanations by caregivers usually starts to make the situation easier. It is hoped that this website makes information about PPB readily available to help families and caregivers. Participation in this PPB Registry may give a family a sense that they can contribute to a body of knowledge which ultimately will make the situation better for future families facing PPB.

PLEASE CONSIDER ENROLLING IN BOTH THE PPB REGISTRY TREATMENT AND BIOLOGY STUDY AND THE PPB GENETIC STUDY

For Families

Families who want to include their child’s information in the PPB Registry should review the For Families page on this website in order to understand the purposes of the Registry and the protection of patient privacy in use of Registry data. The family should then contact the Registry, (612.813.7115 or info@ppbregistry.org) to request Registry consent forms which will authorize their child’s hospital and physicians to give information to the Registry.

Genetic Study in PPB: A New Scientific Study of PPB Causes

The International PPB Registry is conducting a major study of genetic inheritance in PPB patients and their families. We ask that all PPB patients and their families consider participating. Visit http://www.ppbgeneticstudy.org/ or http://dceg.cancer.gov/cgb/research/dicer1-ppb-study for more information.

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Data and recommendations on this site are conscientiously presented but some are unpublished observations and have not undergone peer review. Consultation with the Registry is encouraged to clarify any topics. The International PPB Registry advises caution in the citation of website information.
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