Frequently Asked Questions

Which NIH Institutes and Centers (IC) are participating in the INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndrome) project?

National Cancer Institute (NCI)
National Eye Institute (NEI)
National Heart, Lung, and Blood Institute (NHLBI)
National Institute on Aging (NIA)
National Institute of Allergy and Infectious Diseases (NIAID)
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
National Institute on Deafness and Other Communication Disorders (NIDCD)
National Institute of Neurological Disorders and Stroke (NINDS)
National Center for Advancing Translational Sciences (NCATS)
National Institute of General Medical Sciences (NIGMS)
 

Whom should I contact if I have a specific question about an IC’s scientific priorities?

Anna E. Mazzucco, PhD
National Institutes of Health (NIH)
Telephone: 301-451-1220
Email: anna.mazzucco@nih.gov 

Malcolm A. Smith, MD, PhD
National Cancer Institute (NCI)
Telephone: 240-276-6087
Email: Malcolm.Smith@nih.gov

Houmam Araj, PhD
National Eye Institute (NEI)
Telephone: 301-451-2020
Email: arajh@nei.nih.gov

Charlene Schramm, PhD
National Heart, Lung, and Blood Institute (NHLBI)
Telephone: 301-402-3793
Email: SchrammC@nhlbi.nih.gov

Laurie M. Ryan, PhD
National Institute on Aging (NIA)
Telephone: 301-496-9350
Email: ryanl@mail.nih.gov

Frosso Voulgaropoulou, PhD
National Institute of Allergy and Infectious Diseases (NIAID
Telephone: 240-627-3205
Email: fvoulgaropoulou@niaid.nih.gov

Marie Mancini, PhD
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Telephone: 301-594-5032
Email: mancinim2@mail.nih.gov

Melissa A. Parisi, MD, PhD
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Telephone: 301-435-6880
Email: parisima@mail.nih.gov

Kelly King, PhD
National Institute on Deafness and Other Communication Disorders (NIDCD)
Telephone: 301-402-3458
Email: kingke@nidcd.nih.gov

Robert Riddle, PhD
National Institute of Neurological Disorders and Stroke (NINDS)
Telephone: 301-496-5745
Email: rr260c@nih.gov

Erica Rosemond
National Center for Advancing Translational Sciences (NCATS)
Telephone: 301-594-8927
Email: rosemonde@mail.nih.gov 

Robin Boineau, MD, MA
National Center for Complementary and Integrative Health (NCCIH)
Telephone: 301-435-6286
Email: Robin.Boineau@nih.gov

Donna Krasnewich-Vostal
National Institute of General Medical Sciences (NIGMS)
Telephone: 301-443-6954
Email: dkras@nigms.nih.gov

How many awards has NIH funded under the INCLUDE project for fiscal year 2019 (FY19)?

NIH funded 43 grant awards in FY19. Please see the Funding page for details about past Funding Opportunity Announcements.

How many awards does NIH intend to fund under the INCLUDE project for fiscal year 2020 (FY20)?

The number of awards is contingent upon NIH appropriations and the submission of a sufficient number of meritorious applications. Currently, the mechanism of funding has not been finalized for FY20.

Is a resource sharing plan required for my INCLUDE project?

Yes. All applications, regardless of the amount of direct costs requested for any one year, should include a Data Sharing Plan. The Data Sharing Plan will be considered during peer review and by program staff as award decisions are being made as appropriate and consistent with achieving the goals of the program.It is expected that the results of INCLUDE-funded research will be shared with the wider scientific community in a timely manner. NIH intends to maximize the availability of publications and the sharing of underlying data and biospecimens for INCLUDE-supported supplements and projects.

Under the goals of INCLUDE, recipients are required to develop a Public Access and Data Sharing and Management Plan that (1) describes their proposed process for making resulting publications and biospecimens, and to the extent possible, the underlying primary data immediately and broadly available to the public; (2) if applicable, provides a justification to NIH if such sharing is not possible. Underlying primary data should be made as widely and freely available as possible while safeguarding the privacy of participants and protecting confidential and proprietary data. Additional instructions are provided in the Resource Sharing Plan section of each RFA.

Where can I find assistance in recruiting a cohort of individuals with Down syndrome and/or planning a clinical trial for a co-occurring condition in Down syndrome?

Investigators responding to components 2 or 3 may need some assistance in developing a cohort of subjects with Down syndrome to achieve their study goals, or in clinical trial design and planning. Several resources exist to help with clinical and translational research. The National Center for Advancing Translational Sciences (NCATS) supports the Recruitment Innovation Center (RIC), the Trial Innovation Centers (TICs), and the to facilitate clinical research, clinical trials, and subject recruitment and engagement. Investigators can also propose to use DS-Connect®: The Down Syndrome Registry () to help with recruitment for their projects; to do so, register a professional account with DS-Connect and/or contact the registry coordinator at . In addition, applications addressing components 2 or 3 should strongly encourage participants with Down syndrome or their caregivers to register in DS-Connect.

Who do I contact if I have questions?

If you have questions that are not included in the FAQ, please email: anna.mazzucco@nih.gov.

This page last reviewed on September 25, 2019