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		Download Entire Manual
		Coordinators Manual Cover
		Main Table of Contents
		Overview
		a. Letter of Understanding
		b. Coordinator Responisibility Checklist

 

		Section 1: Contact Information
		a. Section One Table of Contents
		b. Organizational Chart
		c. Resource Mothers Contact Information
		d. Coordinators Contact Information
		e. Communicating with the Coordinating Center

 

		Section 2: Enrollment Procedures
		a. Section Two Table of Contents
		b. Eligibility and Informed Consent
		c. Treatment Plan with a Resource Mother
		d. Treatment Plan without a Resource Mother
		e. Randomization and Assignment of a Resource Mother

		Section 3: Data Collection
		a. Section Three Table of Contents
		b. Data Collection Schedule
		c. Request for Payment (Testing)
		d. Sample Letter to Mother Regarding Testing
		e. Sample Letter to Psychologist Regarding Testing
		f. Filling Out Forms Online
		g. Hard Copies of Forms
		h. Registration and Background
		i. Blood Phenylalanine Log
		j. Nutrition Assessment
		k. Weight Record
		l. Appointments
		m. Outcome
		n. Newborn Pediatric Evaluation
		o. Offspring One-Year Evaluation
		p. Offspring Medical and Support Services
		q. Resource Mother Contact Log
		r. Psychosocial Questionnaires
		s. Social Support Questionnaire
		t. Knowledge of Maternal PKU
		u. How Do You Feel About Yourself
		v. Opinion Questionnaire
		w. Home Organization Scale
		x. Life Stress Questionnaire
		y. Attitude About Treatment

 

		Section 4: Other Information for Coordinators
		a. Section Four Table of Contents
		b. Psychological Testing
		c. Supervision of Resource Mothers

 

		Section 5: Packet for the Resource Mothers
		a. Section Five Table of Contents
		b. Case Information Form
		c. Resource Mother's Visit Log
		d. Resource Mother's Visit Summary
		e. Request for Payment
		f. Optional Questionnaires
		g. How Am I Doing Now?
		h. Diet Goals Worksheet
		i. Initial Diet Checklist
		j. Assessing Food Preferences
		k. Module Assessment
		l. Cooking Experience

 

		Section 6: Other Materials
		a. Protocol for Nutritional Support of Maternal PKU (not online: please contact Boston for hard copy)