Brigham and Women’s Hospital
Dana-Farber Cancer Institute
Massachusetts General Hospital
Version III.a August 1998
Pi_dist9.doc
Imprint Patient ID Number
Protocol Title: Developmental Anatomy Genome Project (DGAP)
Principal/Overall Investigator: Cynthia C. Morton, Ph.D.
Site-Responsible Investigator(s)/Institution: James Gusella, Ph.D. /MGH
Co-Investigator(s)/Study Staff: Drs. B Quade, A Ligon, R Maas, A Michelson, J Gusella, M MacDonald,
E Lemyre, J Lewis
Description of Subject Population: Patients with congenital anomalies
PURPOSE
We would like permission to enroll you as a participant in a research study. The purpose of this research is to identify and study genes involved in human development. You have been asked to participate in this research study because you (or your child) have (or has) one or more developmental abnormalities and chromosomal abnormalities that have been present since birth. Such chromosomal abnormalities may disrupt the function of genes required for normal growth and development. By identifying these genes in people with specific birth defects, we hope to reach a greater understanding of how the human body grows and develops.
STUDY CONTACTS
This study is being organized by Dr. Cynthia C. Morton, who can be reached at 617-732-7980 with any questions you may have during the course of this study. If you enrolled at the MGH, please contact Dr. James
Gusella at 617-726-5724.
PROCEDURES
If you agree to participate, you will donate a blood sample. The amount of blood drawn will vary with age (less than 2 years old: about 1 tablespoon; ages 2-10 years: about 2 tablespoons; ages 11 years and up: about 2-4 tablespoons) and may be reduced for smaller individuals.
In general, after you have donated blood, cells or tissue samples no additional hospitalization or clinic visits will be required for you to participate in this study.
Any of the samples you donate will be used to establish an immortal