Advisory Councils and Committees
Advisory Council to the Universal Newborn Hearing Screening Program
Upcoming Meeting Dates:
Thursday, January 15, 2015
Thursday, March 19, 2015
Thursday, July 16, 2015
Meeting Time: 12:30 pm – 2:30 pm
Meeting Location: Hearing and Speech Agency, 5900 Metro Dr., Baltimore, MD 21215
Please use the parking lot in the rear.
The mission of the Advisory Council to the Universal Newborn Hearing Screening Program is to provide information, to consult with, and advise the Department of Health and Mental Hygiene (DHMH) to ensure that all newborns receive appropriate, high quality early hearing detection and intervention (EHDI) services. Originally established in 1985 (Chapter 402, Acts of 1985), the Council currently operates in accordance with the Annotated Code of Maryland, Health General Article § 13-603.
The Council is actively involved in the planning of the Annual Maryland Infant Hearing Stakeholders Meeting and members consistently attend the annual national Early Hearing Detection and Intervention (EHDI) conference. The Council has established a strong, positive relationship with the Office for Genetics and Children with Special Health Care Needs (OGCSHCN)/DHMH and helps to encourage parent and family involvement in the program.
Infant Hearing Advisory Council Minutes:
Advisory Council on Hereditary and Congenital Disorders
Meeting Date: Monday, January 6, 2015
Meeting Location: Room L-4, DHMH 201 W. Preston Street, Baltimore MD 21201
There will be a vote on a recommendation to add Gaucher Disease and Niemann-Pick Disease to the newborn panel. There will also be a presentation on newborn screening for Fabry Disease.
The Advisory Council on Hereditary and Congenital Disorders provides advice to the Department of Health and Mental Hygiene on the policies and procedures regarding the detection and management of these disorders. This body was previously called the Commission on Hereditary Disorders and it was created by Maryland Statute § 13-101 to 13-110. The Council has legislative, medical, and consumer members, which are appointed by the Governor. The Council considers the incidence of each disease, the effectiveness of treatment, the cost of treatment, public opinion, the opinions of affected individuals and of psychological, ethical, social and economic "experts" in drafting regulations for genetics programs, such as the newborn screening program. Examples of issues discussed by the council include adding new conditions to the newborn screening panel in Maryland, and the implementation of Health Care Reform with respect to individuals with hereditary or congenital disorders. The statute establishing the Council requires all genetics programs to be voluntary, to obtain informed consent, to make test results available to the patients and their health care providers, to respect confidentiality, to provide non-directive genetic counseling and to utilize accurate testing procedures and licensed laboratories.
Advisory Council Minutes:
Statewide Steering Committee on Services for Adults with Sickle Cell Disease
The Statewide Steering Committee on Services for Adults with Sickle Cell Disease is a group of sickle cell patients, health care providers, medical insurers, and community representatives, appointed by the DHMH Secretary. The Committee is charged with educating Marylanders about SCD and identifying resources and services that could be used to improve the lives of affected residents.
Critical Congenital Heart Disease (CCHD) Screening Expert Panel
The CCHD Screening Expert Panel was created by House Bill 714/Senate Bill 786 (2011) – Newborn Screening Program - Critical Congenital Heart Disease. This panel was charged with evaluating the feasibility of implementing newborn screening for CCHD in Maryland. A legislative report was written by the members of the panel, however the legislation also required Maryland to follow the recommendation of the Secretary of Health and Human Services regarding this screening. In September 2011, Secretary Sebelius adopted CCHD screening to the Recommended Uniform Screening Panel. Once this screening began in Maryland, in October 2012, the Expert Panel became the CCHD Screening Advisory Council in order to oversee implementation and quality assurance of the screening. The expert panel will continue to meet 2 to 4 times a year for the next 2 years, after which time its function will be accomplished by the Advisory Council on Hereditary and Congenital Disorders. Membership on this council is voluntary.
Birth Defects Forms Committee
This committee was established by Chapter 224 of Health General Article 18-206 Birth Defects Research – Medical Information. The Committee members are appointed by the Secretary of Health, and the committee is charged with reviewing the information collected on children identified with a birth condition (birth defect). The group meets only once every 2 years to review the current information collected and make recommendations for updates.
Office For Genetics And People With Special Health Care Needs
201 West Preston Street - Baltimore, MD 21201
Tel (410) 767-6730 Fax (410) 333-5047