For Researchers

CARES supports research with funding as well recruitment efforts. All requests for research funding for the following year must be received by September 1 of the current year. For research support, please refer to Research Proposal Guidelines

Research Participation Guidelines and Policy

CARES Foundation (CARES) leads the effort to improve the lives of the Congenital Adrenal Hyperplasia (CAH) community and seeks to advance quality health care through advocacy, research, education and support.

In order to promote CAH-related research, CARES provides information about ongoing research studies to the CAH-affected community and assistance to investigators deemed qualified, by CARES, to conduct credible research.  Such assistance may include participant recruitment, study support and launch through CARES’ constituency and/or CARES-approved Comprehensive Care Center (CCC), and funding.  The different levels of participation by CARES are set forth below.

CARES guidelines related to research proposals

I.  Research is sourced from an institution with an established CAH program, such as those affiliated with CARES CCCs, or any other accredited research hospital and medical center.

II. The research effort has had, or has potential for, a long term relationship with CARES.

III. CARES may directly fund a research study, and actively recruit for participants, if the CARES Board of Trustees (The Board) believes the study is of
 considerable interest to a broad segment of the CARES constituency. CARES will disclose the fact of self-funding, if any, during the participant recruitment process to potential enrollees.

IV. CARES may or may not receive payment for research study assistance, including the activities of participant recruitment. CARES will disclose the fact of payment, if any, during the participant recruitment process to potential enrollees.

V. CARES will assign a level of participation to any research study request. See CARES Levels of Participation in Research below.

CARES policy regarding research proposals

1) A comprehensive and clear constituency benefit is evident to CARES. The Board is principally responsible for determining the advocacy level of interest for any particular CAH-related communication or research effort. The Board may wish to empower a sub-committee to make specific recommendations regarding our advocacy interest.  As a member of the Board, the medical director can facilitate in determining the level of advocacy for any research proposal.

2) A non-political agenda is evident in the research effort.

3) Proposed research study does not employ “DSD” terminology: CARES notes that CAH is sometimes referenced in conjunction with certain umbrella terminology that is found to be inaccurate and unacceptable to a majority of the CAH community. Any research supported by CARES must refer to Congenital Adrenal Hyperplasia (CAH) by said name. CARES does not participate in or support research that employs the term “DSD” to identify CAH or individuals affected by CAH.

4) Evidence of IRB review and approval (if required) is submitted to CARES and documentation of such is kept on file by CARES. If initial IRB approval expires and research is ongoing, documentation of IRB review and extension must be submitted to CARES and kept on file in order for CARES to continue to participate.

CARES Levels of Participation in Research

• No participation

• Research study information posted on website

• Active recruitment of participants through website, email and phone calls

• Study posted on website and active recruitment of participants through website, email and phone calls, plus recruitment through the comprehensive care centers

• Study information posted on website, active recruitment of participants through the website, email and phone calls, recruitment through the comprehensive care centers and funding.