Guidelines and Resources for Clinical Care

Congenital Heart Defects

Congenital Heart Public Health Consortium:  Lifelong Care

This document contains links to resources to help guide transition care and lifelong care for patients with Congenital Heart Defects.


ACOG Committee Opinion #607:  Gynecologic Concerns in Children and Adolescents with Cancer

General Guidelines and Resources

Transition ACT Sheets from the American College of Medical Genetics These clinical information sheets contain information for healthcare providers managing healthcare transitions for patients with certain conditions.



Diabetes Care for Emerging Adults: Recommendations for Transition From Pediatric to Adult Diabetes Care Systems. (American Diabetes Association, 2011) 

Endocine Society Transitions of Care Toolkit:  Type 1 Diabetes

Of particular interest may be the Recommended Approach to Receiving a New Patient and the Clinical Summary form, which are clear and concise.

Managing the Transition of Care for Patients with Type 1 Diabetes.  (Endocrine Society).

Down Syndrome


Epilepsy/seizure disorders

American Epilepsy Society Transition Practice Tools

Two plans to help health care providers guide and care for transitioning patients with epilepsy:

Transition from Pediatric Epilepsy to Adult Epilepsy Care: Adolescent without significant developmental disability plan

 Transition from Pediatric Epilepsy to Adult Epilepsy Care: Adolescent with significant developmental disability plan


Fragile X Syndrome

Clinical Report--Health Supervision for Children with Fragile X Syndrome.  From the American Academy of Pediatrics, includes specific issues related to transition and adult care 

Growth Hormone Deficiency

 Endocrine Society Transitions of Care Toolkit:  Growth Hormone Deficiency

 This toolkit contains resources for pediatric and adult endocrine providers to assist in transition.  Of particular use may be the Clinical Summary for the New Health Care Team and the Recommended Approach to Receiving a New Patient, which are simple and concise.

 Care of the Hormone Deficient Patient: Transition from Adolescence to Adulthood



ACOG Committee Opinion:  Reproductive Health Care for Adolescents with Human Immunodeficiency Virus. September 2013.

HIV Clinical Resource (NY State and Johns Hopkins University)

Moving on Positively: A Guide for Youth, Caregivers, and Providers

From Massachusetts, this guide provides useful information on HIV/AIDS transition.

Transitioning HIV-Infected Youth Into Adult Health Care. From the American Academy of Pediatrics Committee on Pediatric AIDS.



Inflammatory Bowel Disease

Leung, Y et al. Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist.  Inflamm Bowel Dis. 2011 Oct;17(10):2169-73

Metabolic Conditions

Metabolic Condition Basics (Children’s Hospital Boston)


Sickle Cell Disease

Solid Organ Transplant

 Solid Organ Transplantation in Childhood: Transitioning to Adult Care (LaRosa et al, Pediatrics 2011)

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