Palliative Care Needs of Individuals with Advanced Rare Diseases and Their Family Caregivers (R01 Clinical Trial Optional) | PA 18 149

FAQs: NIH PA 18-149 - Palliative Care Needs of Individuals with Advanced Rare Diseases and Their Family Caregivers (R01 Clinical Trial Optional)

1) What is the official title and identifier of this funding opportunity?

The funding opportunity announcement is NIH PA 18-149, titled "Palliative Care Needs of Individuals with Advanced Rare Diseases and Their Family Caregivers (R01 Clinical Trial Optional)."

2) What type of funding mechanism does this opportunity use?

This opportunity uses the NIH R01 research project grant mechanism.

3) What is the central aim of this FOA?

The central aim is to strengthen the scientific evidence base for palliative care in the context of advanced rare diseases (including rare cancers), with an emphasis on improving physical symptoms and psychosocial well-being and ultimately increasing quality of life for patients and family caregivers.

4) What populations is the FOA focused on?

The FOA focuses on individuals living with serious, advanced rare diseases (including rare cancers) and explicitly includes family caregivers as a population of interest.

5) Why does this FOA emphasize rare diseases specifically?

It is designed to expand knowledge about what palliative care should look like for rare disease populations, where evidence and models drawn from more common illnesses may not translate well. Rare diseases can involve unique trajectories, uncertain prognoses, limited treatment options, fragmented expertise, and high caregiver responsibility.

6) What does "Clinical Trial Optional" mean for applicants?

"Clinical Trial Optional" means applicants may propose either clinical trial research or non-trial research, as long as the approach is appropriate for advancing palliative care knowledge and practice in advanced rare diseases.

7) What kinds of research does this FOA aim to encourage?

The FOA encourages rigorous studies that identify unmet palliative care needs, test or refine palliative care interventions, and generate actionable findings that clinicians and health systems can use to deliver better supportive care earlier and more effectively.

8) What outcomes are projects generally expected to address?

Projects would generally be expected to address outcomes that matter to patients and caregivers, including symptom burden, psychological distress, social functioning, communication and decision-making support, caregiver strain, bereavement-related outcomes, and overall quality of life.

9) What types of symptoms are specifically mentioned as relevant outcomes?

The FOA mentions symptom burden such as pain, fatigue, dyspnea, nausea, insomnia, and related physical symptoms experienced by people with advanced rare conditions.

10) What psychosocial outcomes are explicitly highlighted?

Psychological distress is highlighted, including anxiety, depression, and existential or spiritual distress, along with social functioning and support for communication and decision-making.

11) How are family caregivers addressed in this FOA?

The FOA explicitly includes family caregivers and recognizes they often face substantial emotional, practical, and financial burdens. It signals that proposals can and should consider caregiver needs directly, including caregiver-focused interventions and measurement of caregiver outcomes.

12) Are caregiver outcomes expected to be measured as part of the research?

The announcement indicates caregiver outcomes are important and supports studies that measure caregiver outcomes rather than treating caregivers as secondary or incidental participants.

13) Does this FOA support dyadic or family-centered research approaches?

Yes. The FOA signals interest in dyadic or family-centered approaches, caregiver support interventions, and studies that incorporate caregiver well-being as an essential target in serious illness.

14) What is the intended impact on clinical practice or health systems?

The intent is to produce stronger evidence and practical insights that clinicians and health systems can use to deliver better supportive care earlier and more effectively for advanced rare diseases and rare cancers.

15) What NIH activity categories or domains does this program align with?

The program is described as falling under NIH funding activity categories tied to education and health and aligns with NIH interests in areas related to aging, cancer, and other health domains relevant to palliative care and serious illness.

16) Which CFDA numbers are associated with this opportunity?

The FOA is associated with multiple CFDA numbers: 93.361, 93.393, 93.395, and 93.399.

17) Is an award ceiling or number of awards provided in the source information?

No. The source information does not list an award ceiling or the expected number of awards.

18) What does the R01 mechanism imply about project scope and support?

While the source does not provide specific budget limits, it notes that an R01 mechanism typically implies substantial, multi-year support for well-developed research projects with a strong preliminary rationale and a clear plan for generating generalizable knowledge.

19) Who is eligible to apply (in general terms)?

Eligibility is broad and includes many domestic applicant types such as government entities, institutions of higher education (public and private), tribal governments, public housing authorities, nonprofits (with or without 501(c)(3) status, with exclusions noted), for-profit organizations (other than small businesses), small businesses, and other entities.

20) Are nonprofits eligible to apply?

Yes. Nonprofits with and without 501(c)(3) status are listed as eligible applicant types (with the source noting exclusions related to institutions of higher education within those nonprofit categories).

21) Are for-profit organizations and small businesses eligible?

Yes. For-profit organizations (other than small businesses) and small businesses are both included in the eligibility list.

22) Are tribal governments eligible to apply?

Yes. Federally recognized Native American tribal governments are eligible, and the FOA also highlights that Indian/Native American tribal governments that are not federally recognized are included among additional eligible applicant types.

23) Are minority-serving and specialized institutions explicitly encouraged or included?

Yes. The FOA highlights eligibility for Alaska Native and Native Hawaiian Serving Institutions, AANAPISISs, Hispanic-serving institutions, HBCUs, and TCCUs.

24) Are faith-based or community-based organizations eligible?

Yes. Faith-based or community-based organizations are listed among additional eligible applicant types.

25) Can federal agencies apply?

Yes. The FOA lists eligible federal agencies among additional eligible applicant types.

26) Are U.S. territories or possessions eligible to apply?

Yes. U.S. territories or possessions are included among additional eligible applicant types.

27) Are non-U.S. (foreign) entities eligible to apply?

Yes. The FOA states that non-domestic (non-U.S.) entities may apply, meaning foreign organizations are eligible.

28) Why might broad and non-U.S. eligibility be important for this topic?

The source notes that rare disease expertise and patient populations may be geographically dispersed, and impactful palliative care research may be rooted in academic medical centers, community settings, or specialized advocacy and care networks.

29) What are the key administrative dates provided in the source?

The source lists a CreationDate of 2017-11-07 and an OriginalClosingDate of 2020-01-07.

30) What timeframe does the OriginalClosingDate suggest?

It suggests the opportunity was open during that period, based on the provided OriginalClosingDate of 2020-01-07.

31) Does the FOA explicitly include rare cancers?

Yes. The FOA explicitly includes rare cancers within the scope of advanced rare diseases.

32) What is the overarching goal for patients and caregivers?

The overarching goal is to increase quality of life for people living with serious, advanced rare conditions and to address caregiver well-being as an essential component of improving outcomes in serious illness.