THE INTERNATIONAL COLLABORATIVE STUDY ON MATERNAL PHENYLKETONURIA - ORGANIZATION, STUDY DESIGN AND DESCRIPTION OF THE SAMPLE

The International Maternal Phenylketonuria (PKU) Collaborative Study c ommenced in 1984 to evaluate the efficacy of the low-phenylalanine die t in reducing the morbidity associated with maternal PKU syndrome. Fou r hundred and sixty eight (468) pregnancies resulted in 331 live birth s, 3 stillbirths, 61 spontaneous abortions, 2 ectopic pregnancies and 71 elective terminations. Since its inception, the study has steadily progressed toward its goal of diet initiation preconception or early i n pregnancy. By 1994, 51% of the sample began the diet preconceptional ly, with an additional 41% doing so by 8 weeks gestation. The number o f adolescent pregnancies has decreased from 31% to 9%, college attenda nce has increased from 5% to 16%, number of women in the lowest socioe conomic classes has decreased from 95% to 59% and average IQ has incre ased from 78 to 88, The organization of the network of 130 referral ce nters and clinics within the U.S.A., Canada and Germany and the object ives of the scientific research investigation have served to provide a derived benefit of outreach, education, reproductive counseling and e arly diet intervention in a large cohort of PKU women.