NYMAC
(New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services)
NYMAC Collaborative
NYMAC States
Subcontracts
Alfred I. duPont Hospital for Children
Principal Investigator: Louis Bartoshesky, MD, MPH
Address: Nemours Children's Clinic - Wilmington, 1600 Rockland Road, Wilmington, DE 19803
Newborn Screening Specialty: All Newborn Screening Categories
Term of Contract: July 1, 2005 - May 31, 2007
Goal: To improve the short and long term follow-up of children identified on newborn screening as likely affected by one of the disorders on the newborn screening panel.
- Objective 1: System information on the babies with abnormal results who are to be referred to A.I. duPont Hospital for Children will be transmitted by phone or fax to the liaison counselor (liaison).
- Objective 2: The liaison will be responsible for developing a database, which will include all babies referred to metabolism, endocrinology and hematology by NBP.
- Objective 3: Assure continuity of medical care while adhering to HIPAA guidelines.
The Brooklyn Hospital Center
Principal Investigator: Swayam Sadanandan, MD
Address: 121 Dekalb Avenue, Brooklyn, NY 11201-5425
Newborn Screening Specialty: Hemoglobinopathies
Term of Contract: July 1, 2005 - May 31, 2007
Goal: To create and maintain a comprehensive database of children diagnosed by the New York State Newborn Screening Program.
- Objective 1: To create and maintain database of families of infants with abnormal newborn screening results.
- Objective 2: Maintain tracking information on re-testing, counseling and education of the parents of infants with sickle cell and other hemoglobinopathy traits.
- Objective 3: Provide culturally-sensitive educational material in English, Spanish, or French as needed.
- Objective 4: Enroll patients identified with SCD in a comprehensive Sickle Cell Program and provide ongoing education and treatment.
Goal: To maintain a comprehensive database of the medical care and treatment of patients with sickle cell disease (SCD) and other hemoglobinopathies in a comprehensive treatment center.
- Objective 1: Maintain on-going data on preventive and therapeutic interventions to patients with SCD and other hemoglobinopathies by a consistent team of health care professionals.
- Objective 2: Create and maintain a tracking mechanism to assess the impact of intervention strategies on the lives of affected individuals and to provide opportunities for clinical trials.
Goal: Develop and maintain a tickler file to ensure ongoing and consistent medical care of children with SCD and other hemoglobinopoathies.
- Objective 1: Create a computerized database that will systematically produce reminders for scheduled appointments for preventive care and screening tests including eye exams, cardiac evaluation and TCD.
- Objective 2: Collaborate with various community and faith-based organizations, colleges and workplace to reach out to large groups of individuals.
- Objective 3: Expand the existing educational program presently being provided to The Brooklyn Technical High School and Long Island University.
Goal: Identification of Social, Cultural and Economic barriers to care.
- Objective 1: Create culturally and linguistically-sensitive educational material.
- Objective 2: Assist the CSCP team to overcome social, economic and cultural barriers to care.
Children's Hospital Foundation at Westchester Medical Center, Inc.
Principal Investigator: Richard A. Noto, MD
Address: 1 Kid's Corner, Valhalla, NY 10595
Newborn Screening Specialty: Endocrinology
Term of Contract: July 1, 2005 - May 31, 2007
Goal: Ensure that all children identified with an endocrine disease through newborn screening receive timely and effective medical and personal care.
- Objective 1: Provide timely evaluation, treatment and follow-up.
- Objective 2: Assess the best mode of care for the patients who we treat for congenital hypothyroidism and congenital adrenal hyperplasia.
- Objective 3: Aside from medical care and follow up support, we would like to provide social help in terms of applying for Medicaid and housing.
Children's Hospital Foundation at Westchester Medical Center, Inc.
Principal Investigator: David Kronn, MD
Address: 1 Kid's Corner, Valhalla, NY 10595
Newborn Screening Specialty: Inherited Metabolic Disease
Term of Contract: July 1, 2005 - May 31, 2007
Goal: To improve tracking of patients diagnosed with newborn screened metabolic disorders.
- Objective 1: Develop an Access database to track patients.
- Objective 2: Review all patient case management plans in post clinic meeting after each clinic.
Goal: To improve overall outcomes of treatment interventions.
- Objective 1: Monitor medical formula needs and the patient's understanding of the necessity of the medical formula.
Goal: To improve overall compliance with treatment.
- Objective 1: Decrease no show rate at Inherited Metabolic Disease Clinic
Goal: To improve awareness of newborn screening in the community.
- Objective 1: Give one grand rounds lecture on newborn screening/metabolism in all the main hospitals in the region. The target is 6 lectures a year.
- Objective 2: Develop brochure for Medical Center Inherited Metabolic Disease Clinic program, and distribute to ob/gyn offices in the region.
Children's Hospital of Philadelphia
Principal Investigator: Can Ficicioglu, MD, PhD
Address: 34th Street and Civic Center Boulevard, Philadelphia, PA 19104-4399
Newborn Screening Specialty: Inherited Metabolic Disease
Term of Contract: July 1, 2005 - May 31, 2007
Goal: To improve the short and long term follow-up of children identified on newborn screening as likely affected by an inherited metabolic disease.
- Objective 1: To assist patients and families to be the best consumers (users) of all available resources (personal, public and private) in order that they can maintain the best levels of health and functioning possible across the continuum.
- Objective 2: To collaborate with the interdisciplinary team in the development and implementation of timely and appropriate psychosocial plans of care for patients, families, and caregivers across the continuum of care.
- Objective 3: Remove all barriers that impede the accessing comprehensive medical care.
- Objective 4: Facilitate communication between medical team and family.
- Objective 5: Support emotional health of entire family through support groups and mental health referrals.
Children's Medical Center at Stony Brook
Principal Investigator: Patricia Galvin-Parton, MD
Address: Department of Pediatrics, HSC - T11, Division of Genetics, SUNY at Stony Brook, Stony Brook, NY 11794-8111
Newborn Screening Specialty: Inherited Metabolic Disease
Term of Contract: July 1, 2005 - May 31, 2007
Goal: Develop a program that will maintain communication with identified at-risk families and their physicians.
- Objective 1: Continue our system of short term tracking and follow-up.
- Objective 2: Review and improve our system of long term tacking and follow-up.
- Objective 3: Monitor the clinical progress of children with a confirmed positive diagnosis.
- Objective 4: Monitor the effectiveness of our treatment protocols.
- Objective 5: Help families deal with the possibility of a false positive result.
Lincoln Medical and Mental Health Center
Principal Investigator: Kenneth Rivlin, MD, PhD
Address: 234 East 149th Street, Bronx, NY 10451
Newborn Screening Specialty: Hemoglobinopathy
Term of Contract: July 1, 2005 - May 31, 2007
Goal: Ensure comprehensive care for infants identified with sickle cell disease by newborn screening by instituting an innovative case management program - the Volunteer Parent Sickle Cell Disease Navigator.
- Objective 1: All SCD patients from birth to three years of age, identified by newborn screening for SCD, will be offered connection to a trained VPN.
- Objective 2: All SCD patients from birth to three years of age, identified by newborn screening, will have a yearly care plan done in collaboration with the parents, SCD Center and primary care pediatrician.
- Objective 3: All SCD patients from birth to three years of age, identified by newborn screening, will have a yearly needs assessment and connections to community resources.
Mount Sinai Medical School
Principal Investigator: Robert Rapaport, MD
Address: One Gustave L. Levy Place, New York, NY 10029
Newborn Screening Specialty: Endocrinology
Term of Contract: July 1, 2005 - May 31, 2007
Goal: To improve the short and long term follow-up of children identified on newborn screening as likely affected by an endocrine disease.
- Objective 1: To have a database that contains individual medical records that document all services provided to the patient and allow the individual patient data to be summarized to provide reports on the comprehensive cohort of children with abnormal newborn screen for CH (including each diagnostic category).
- Objective 2: To improve tracking of patients/continuity of care by improving communication with families regarding up-coming appointments and missed appointments/laboratory evaluations to ensure appropriate case management.
- Objective 3: To intervene with appropriate social/medical services when necessary.
- Objective 4: To improve medical management of patients.
- Objective 5: To improve parental knowledge and acceptance of the diagnosis of CH.
- Objective 6: To educated and establish active partnerships with primary care providers for contact and management issues and other local agencies to improve access to support services.
Mount Sinai Medical School
Principal Investigator: Melissa Wasserstein, MD
Address: Department of Human Genetics, Box 1497, One Gustave L. Levy Place, New York, NY 10029
Newborn Screening Specialty: Inherited Metabolic Disease
Term of Contract: July 1, 2005 - May 31, 2007
Goal: Develop a data management system to monitor patient contact, diagnostic evaluation, initial and long-term management.
- Objective 1: Create a data management system.
Goal: Develop multilingual educational material about the metabolic diseases in the Newborn Screening Panel.
- Objective 1: Create 3 new pamphlets, one detailing the fatty acid oxidation defects on the Newborn Screening Panel, another describing the urea cycle diseases, and a third detailing the organic acidemias.
Goal: Overcome barriers to accessing necessary medical care for children with special health care needs.
- Objective 1: Establish funds for families who are unable to pay for transportation to and from scheduled medical visits.
- Objective 2: Apply for financial assistance from the Physically Handicapped Children's Program for necessary testing, formula and other support.
St. Joseph's Regional Medical Center
Principal Investigator: Shari Fallet, DO
Address: 703 Main Street, Paterson, NJ 07506
Newborn Screening Specialty: All Newborn Disease Categories
Term of Contract: July 1, 2005 - May 31, 2007
Goal: Develop an electronic tracking system that will ensure that all newborn screenings are done, that tests are sent to the appropriate labs and that test results are sent back to the appropriate providers and patients.
- Objective 1: Convert our newborn blood screening and tracking system from a paper to an electronic one.
- Objective 2: Develop a tracking system for every baby screened that has a time sensitive indication, which can flag results are "received or not received," with the goal of developing a model program and the objective of improving the follow-up system.
Goal: Improve the follow-up on lab results that indicate a medical problem for the newborn (or their family members in the case of genetic disorders like Sickle Cell Anemia).
- Objective 1: Use the follow-up program to offer testing and counseling to siblings and parents of identified trait carriers.
- Objective 2: Provide genetic counseling to those infants who screen positive for hearing disorders.
- Objective 3: Use the proposed system to improve confidentiality and compliance with HIPAA regulations.
Goal: Conduct in-service training to both increase inter-departmental coordination and also instruct users on the new electronic tracking system once it is in place.
- Objective 1: Place greater emphasis on interdisciplinary communication and cooperation.
- Objective 2: Workshops for the medical and patient community will insure the testing results actually lead to appropriate treatment for the affected newborn.
University of Rochester
Principal Investigator: Georgianne Arnold, MD
Address: 601 Elmwood Avenue, Box 777, Rochester, NY 14642
Newborn Screening Specialty: Inherited Metabolic Disease
Term of Contract: July 1, 2005 - May 31, 2007
Goal: Address the extent to which increased availability of social work services will enhance our care and address the needs of our newborn screen families while promoting stronger links to the outlying community.
- Objective 1: Make social work available for each family referred to clinic for newborn screen follow-up.
- Objective 2: Use the social worker to assist the metabolic treatment team with psychosocial needs of families who have infants diagnosed with an inborn error of metabolism by accessing services and resources.
- Objective 3: Develop a formal parent-to-parent network for parents of affected infants, children and parents that will provide educational opportunities as well as social support for the families.
Virginia Commonwealth University
Principal Investigator: Arti Pandya, MD, MBA
Address: Department of Human Genetics, P.O. Box 980033, Richmond, VA 23298-0033
Newborn Screening Specialty: Inherited Metabolic Disease
Term of Contract: July 1, 2005 - May 31, 2007
Goal: Improve information management component of existing system.
- Objective 1: Review existing system and compare with other systems to define needs.
- Objective 2: Codify and begin to implement requirements of more comprehensive file system with tickler system, HIPPA protocols, and improved medical record management.
- Objective 3: Develop a format for quarterly reports that meet state and NYMAC system needs.
Goal: Enhance reality of care coordination (fiscal, systems, and family support emphasis) within complex medical case management.
- Objective 1: Engage a Care Connection for Children (CCC) coordinator in outreach metabolic clinics and metabolic meetings.
- Objective 2: Develop checklists/protocols for barrier identification with particular emphasis on issues related to insurance coverage.
- Objective 3: Identify strategies for linking under-served and un-served populations with existing programs
Goal: Promote family support and education.
- Objective 1: Determine which educational materials need translation.
- Objective 2: Contract to have specified materials translated.
- Objective 3: Consult with CCC coordinator to identify translation services by region.
Goal: Evaluate the program.
- Objective 1: Provide data for quarterly reports.
- Objective 2: Develop 2 quality/safety measures.
- Objective 3: Develop barriers checklist wit a strategies for action that will serve as basis for developing year 2 objectives and activities.