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Data Coordinating Center for Sudden Cardiac Death in the Young Registry

Solicitation Number: CDC13-01DCC-SDY
Agency: Department of Health and Human Services
Office: Centers for Disease Control and Prevention
Location: Procurement and Grants Office (Atlanta)
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Special Notice
Added: Nov 09, 2012 9:30 am
The Division of Reproductive Health (DRH) seeks information about organizational capacity for a data coordinating center (DCC) to serve a sudden death in the young registry. This registry will build on current the Sudden Unexpected Infant Death Case Registry and child death review activities.

Sudden death in the young (SDY) is a tragedy that affects children and young adults of all ages, making it a critical public health concern. Development of effective screening and prevention strategies is currently limited by the lack of prospectively defined epidemiological data, including incidence rates of specific causes of death (e.g., sudden cardiac death, sudden unexplained death in epilepsy). To address this knowledge gap, the CDC and the National Institutes of Health (NIH) are developing a program to explore and provide greater understanding of SDY by developing a surveillance system and registry that will broaden and enhance the activities of CDC's Sudden Unexpected Infant Death (SUID) Case Registry. We expect many of the infant SDY cases to be a subset of the SUID cases.

The SUID Case Registry ( is a state-based surveillance system that builds on local and state child death review team programs. State grantees participate through a cooperative agreement with the CDC. Grantees agree to follow child death review procedures and protocols developed by the National Center for the Review and Prevention of Child Death ( ). The National Center for the Review and Prevention of Child Death provides technical assistance to improve comprehensive child death reviews for the SUID Case Registry and for all 50 states and the District of Columbia. They also manage the web-based data entry system that all SUID Case Registry grantees use for monitoring and evaluating their child death review programs.

By building on the same SUID Case Registry infrastructure, CDC and NIH will develop the SDY registry, the first US prospective, multi-state surveillance system to improve knowledge about SDY incidence. Similar to child death review and SUID case review, multidisciplinary teams will review and enter data from death certificates, medical records, death scene investigations, and pathology reports. In addition, a serum sample for DNA extraction will be collected from a subset of cases.
The SDY Registry and surveillance system's objective are:
• To prospectively identify and review SDY cases from birth to 24 years of age in up to 15 states by building upon current SUID Case Registry activities for state-based surveillance;
• To build upon the current web-based data entry system used by state and local child death review teams and SUID Case Registry grantees;
• To collect and store biospecimens from registry cases that can be used by NIH-grantees to improve knowledge about SDY etiologies.

Core Skills and Tasks
The core tasks of the contract will include:
1. Train state grantees and corresponding child death review teams to identify and review all SDY cases
2. Develop a monitoring and evaluation plan including a quality improvement plan with state grantees to improve timeliness and reduce missing and unknown data.
3. Build upon and maintain relationships with state, regional and/or local child death review teams, health department personnel, child protection services, medical examiners/coroners, pathologists, pediatricians (including specialists in cardiology and neurology), etc.
4. Convene planning meetings with experts (medical examiners, coroners, pathologists, death investigators, pediatricians including specialists in cardiology and neurology, etc.) to plan the SDY Registry, including its methods, reports, and evaluations.
5. Assemble a Medical Examiner Panel charged with developing a standardized autopsy protocol for evaluating a case of SDY, including the collection of biospecimens, and recommending how to best incorporate medical examiners/coroners into the registry activities.
6. Develop a governing structure for the SDY Registry, including a Steering Committee and related sub-committees.
7. Develop a procedure for the collection of serum at autopsy to include consent as required.
8. Train medical examiners and/or pathologists to collect and ship serum samples per established SDY Registry protocol
9. Store biospecimens in a biorepository that meets NIH standards or sub-contract with an appropriate biorepository.
10. Develop a procedure and mechanism to make biospecimens available to the scientific community.

Potential DCC's should have the following current in-house capability and capacity:
1. Staff expertise and experience in creating and sustaining child death review systems (or similar death review systems) in states and local communities
2. Staff expertise and experience in building and maintaining collaborative relationships with individuals and organizations involved in the child death review process.
3. Experience and expertise in the development and maintenance of a web-based electronic data entry system with case report forms, including adherence to federal and state privacy and security laws.
4. Staff, facilities and infrastructure necessary to create supplemental variables to the pre-existing data entry system and case report forms, update the data dictionary and provide quarterly data sets.
5. Staff expertise in providing technical assistance and training for the multidisciplinary review, data entry and data quality improvement for SDY cases using child death review and SUID Case Registry protocols and procedures.
6. Current relationships with state, regional and/or local child death review teams, health department personnel, child protection services, medical examiners/coroners, pathologists, pediatricians (including specialists in cardiology and neurology), etc.

Capacity Statement:
Capacity statements should clearly detail relevant expertise and the ability to perform the tasks described in this notice as described. Examples of prior completed government contracts of similar nature, references and other related information should be included. The capacity statements may not to exceed seven pages in length, shall include the following information: company name, address, point of contact, phone/fax/email, and business size and status (e.g. small business, 8 (a), veteran-owned small business, service-disabled veteran owned small business, HUBZone small business, small disadvantaged business, and women owned small business).

Response Guidelines
This Request for Information (RFI) is covered under the Privacy Act System of Records 09-25-0156, "Records of Participants in Programs and Respondents in Surveys Used to Evaluate Programs of the Public Health Service, HHS/PHS/NIH/OD."
This RFI is for collecting information to improve the planning purposes only and should not be construed as a solicitation for applications or as an obligation on the part of the Government to provide support for any ideas identified in response to it. This is NOT solicitation for proposals, proposal abstracts, or quotations. The purpose of this notice is to obtain information. The Government does not intend to award a grant or contract on the basis of the responses to this RFI. Nor does it otherwise pay for the preparation of any information submitted or for the Government's use of such information. Acknowledgement of receipt of responses will not be made, nor will respondents be notified of the Government's evaluation of the information received. All responses will be regarded as confidential. No basis for claims against the Government shall arise as a result of a response to this request for information or the Government's use of such information as either part of our evaluation process or in developing specifications for any subsequent announcement. Not responding to this RFI does not preclude participation in any related future solicitations or FOAs. Any proprietary information should be so marked.

Please indicate "Sudden death in the young (SDY) RFI" in the title of your e mail and send to: E-mail: Lena Camperlengo RN, DrPH, at

2920 Brandywine Road, Room 3000
Atlanta, Georgia 30341-4146
Performance will be conducted at Contractor's facility

United States
Gordon D. Barritt,
Contracting Officer
Phone: 770 488 2724
Fax: 770 488 2044