CCHS NETWORK CALL FOR RESEARCH 2025

In March of 2003, it was established that a mutation of the PHOX2B gene was the primary cause of CCHS. This was a groundbreaking finding for researchers, clinicians, and most importantly, patients living without explanation of their extremely rare diagnosis. With the subsequent development of a mouse model, much is being learned about the genetic intricacies of CCHS.

Eligibility Criteria

Applicants must hold a doctoral degree (Ph.D., M.D., or equivalent) and a faculty appointment or equivalent with demonstrated institutional support for the Principal Investigator (PI), such as dedicated research lab space or clinical study resources. Eligible applicants may request funding between $50,000 and $100,000.

To encourage the recruitment of junior faculty, post-doctoral fellows, and residents into CCHS research, a grant of up to $50,000 is available this funding cycle. Applications must include evidence of a mentoring team and a strong letter of support.

Prior recipients of a CCHS Grant Award may apply for a grant award provided sufficient progress was made on the original project and documentation is up-to-date as determined by the CCHS Research Advisory Board (RAB).

Research Focus Areas

We are actively seeking proposals in various areas of CCHS, including basic research into any aspect of CCHS biology, translational development of innovative technologies or treatment modalities, and human studies related to the CCHS population. We welcome projects that will:

  1. Highlight the core biology of central and peripheral respiratory mechanisms.

  2. Emphasize translation of basic research findings into potential treatments for CCHS.

  3. Focus on the real-world impact of healthcare improvements to enhance the quality of life for individuals with CCHS.

We encourage researchers to consult with the CCHS Network when developing clinical and translational research proposals. Additionally, the CCHS Network has established a collaborative advisory relationship with the RTW Foundation (RTWF) to support such CCHS research. Interested researchers may contact the CCHS Network (mycchsnetwork@gmail.com) to facilitate a meeting with the  RTWF for consultation on their proposed research.

Review Process

Applications are peer-reviewed by the CCHS Research Advisory Board (RAB) comprised of researchers and physicians respected for their accomplishments and expertise in the care of CCHS patients and the biology of CCHS. Also on the RAB are parents and family members of CCHS patients who are have a medical or scientific background.

The following review criteria will be used when reviewing applications and determining funding decisions:

Investigator(s)

What training and experience does the applicant, and the research team, have to ensure successful implementation of the proposed research? The track record and productivity of the investigative team will also be assessed.

Significance

Will the proposed work make a significant impact in the understanding, treatment, or care of CCHS patients?  What potential does the research have to advance the field of CCHS research?

Approach

Are the overall strategy, experimental design, and methodology well-reasoned and appropriate to achieve the proposed specific aims of the project within the grant term?

Are potential problems and alternative strategies described? Are benchmarks and metrics of success presented? Is the budget fully justified for the proposed project

Institutional Environment

What institutional resources (equipment, core facilities, support, collaborators) are available to the applicant and are they adequate to facilitate and successfully complete the proposed project?

APPLICATION INSTRUCTIONS

Applications should include the project title and abstract, applicant contact information and biographical sketch, institutional contact information, research strategy, references, budget with justification, and organizational assurances. Research strategy should be no longer than 5 pages and include these sections: Specific Aims, Significance, and Approach. References, budget, and budget justification are not counted against the 5-page limit.

Please send final applications to mycchsnetwork@gmail.com.

BUDGET

Proposed expenses related to the research project may include research laboratory supplies, equipment, and publication charges for manuscripts that pertain directly to the funded project. Equipment requests should not exceed more than 10% of the total budget. An accompanying detailed budget justification is required. Indirect and overhead costs, as well as salary for an established PI, are not permitted. However, junior faculty, post-doctoral fellows, and residents may request up to 25% of the total award amount  in salary support. Additionally, salary support for other key research personnel may be requested as needed.

Program Inquiries

For application information, policies and procedures, and general information, please email the RAB Chair at eddyyang@cchsnetwork.org and lindadokas@cchsnetwork.org.

Research Advisory Board Members

CCHS grants are reviewed by the Research Advisory Board using an NIH-based protocol. Board members are CCHS professional experts and family members with science and medical backgrounds
  • Eddy Yang, M.D./Ph.D., Co-Chair
  • Linda Dokas, Ph.D., Co-chair
  • Jason Burbach, M.S., Aerospace Engineer
  • Maida Chen, M.D., CCHS Specialist
  • Patrice Guyenet, Ph.D., CCHS and Breathing Researcher
  • Ajay Kasi, M.D., CCHS Specialist
  • Sheila Kun, MS Nursing, CCHS Specialist
  • Melinda Riccitelli, Ph.D., Ex officio, President, CCHS Network