Notice Number: NOT-HD-13-019

Key Dates
Release Date: December 17, 2013
Response Date: February 14, 2014

Related Announcements
None

Issued by
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)

Purpose

This Notice is a time-sensitive Request for Information (RFI) by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). For the purposes of planning a scientific research workshop and other uses, the Institute seeks comments and suggestions of research questions about the impacts of disorders of sex development (DSD) on child development, from infancy through adolescence, for affected individuals and their families. (Some affected individuals and families may prefer the terminology of specific diagnostic categories such as congenital adrenal hyperplasia or the alternative term "intersex.")

Background

Child Development is a process in which a child's physical, cognitive, emotional, and social maturation is influenced by multiple interacting variables, including genes and the child's environment, such as family and peer environments. In one of every 4,500 births, a child is born with a congenital condition in which development chromosomal, gonadal, or anatomic sex is atypical, which then may not permit determination of the infant's sex at birth. These conditions raise important developmental and medical issues. Different aspects of these issues relate to diagnosis, clinical management, and family functioning. Yet little is known about the short- and long-term outcomes of current medical or psychosocial interventions for DSD or of decisions to forego these interventions. Even less is known about the impact of DSD on the child and the child's family during different periods of development, which can have important implications for the timing and nature of clinical, including psychological, care. The multiplicity of variables that affect a child's development and the heterogeneity of conditions that comprise DSD present substantial methodological challenges for developing scientific evidence on critical developmental issues for children with DSD and their families as well as for medical practitioners.

Information Requested

To further its core mission to ensure that all children have the chance to achieve their full potential for healthy and productive lives, the NICHD is planning a multidisciplinary scientific workshop to examine what research is needed on critical developmental issues in infants, children and adolescents with DSD. The Institute is particularly interested in input from families and affected individuals that could help guide the focus of the workshop discussions on a range of topics, which may include but may not be limited to:

• Diagnostic factors associated with health and wellbeing outcomes at different developmental periods in children and families affected by DSD;
• Clinical (including psychological) management factors associated with health and wellbeing outcomes at different developmental periods in children and families affected by DSDs;
• Social factors associated with health and wellbeing outcomes at different developmental periods in children and families affected by DSD; including the role of parent, peer support, and patient advocacy groups;
• Decision-making processes and factors about the nature and timing of interventions for children and families affected by DSD;
• DSD as a chronic congenital condition and what may be learned from scientific research on the developmental impacts, at different developmental periods, of other chronic and potentially stigmatized conditions on affected children and families.

Information is sought from all stakeholders in the extramural community and general public on potential research questions, issues and concerns encompassed in the topics identified above and any others that they consider important to the health and healthy development of children born with DSD from infancy through adolescence. The immediate focus of this RFI is to assist in the planning for the workshop focused on DSD impacts on child development but responses are also being collected for future consideration by NICHD and other NIH Institutes and Centers. Thus, comments on additional topics, such as research needs relevant to living with DSD as adults and ethical considerations in the care of DSD conditions, may also be submitted.

Please note that the Institute has already received a number of thoughtful and comprehensive comments on DSD/intersex research needs and related matters that organizations and individuals submitted in response to the June 27, 2013 RFI Inviting Comments and Suggestions on the Health and Health Research Needs, Specific Health Issues and Concerns for Lesbian, Gay, Bisexual, Transgender, and Intersex (LGBTI) Populations (NOT-OD-13-076). These comments, compiled in de-identified form, are already under consideration as the Institute moves forward with workshop planning. This current RFI requests information relevant specifically to issues for children, adolescents and their families living with DSD.

How to Submit a Response

All comments must be submitted to NICHD_Workshop_RFI_C@mail.nih.gov. Responses to this RFI will be accepted through February 14, 2014. You will see an electronic confirmation acknowledging receipt of your response, but will not receive individualized feedback on any suggestions.

Response to this RFI is voluntary. Responders are free to address any or all of the above items. Please note that the Government will not pay for response preparation or for the use of any information contained in the response. The comments collected will be analyzed and considered in planning and development of the child development workshop and in future initiatives

All personal identifiers (e.g., names, addresses, email addresses, etc.) will be removed when responses are compiled. However, please do not include any personal, sensitive or confidential information that you do not wish to make public.

This RFI is for planning purposes only and is not a solicitation for applications or an obligation on the part of the United States (U.S.) Government to provide support for any ideas identified in response to it. No basis for claims against the U.S. Government shall arise as a result of a response to this request for information for from the Government’s use of such information.

Inquiries

Specific questions about this RFI should be directed to the following email address: NICHD_Workshop_RFI_Q@mail.nih.gov