We established the Jeffrey Modell Centers Network (JMCN) to meet the rising need for referrals and specialized centers for patients identified with Primary Immunodeficiency worldwide. It was our hope that our experts at these centers would improve the quality of life and reduce mortality and morbidity of patients while impacting the field of immunology on a global scale.
Our JMCN experts consistently contribute to our cross-continental network, discovering and sharing invaluable medical developments and encouraging better access to care for more than 285,000 patients. We encourage investigators to connect with other physicians to coordinate studies, develop research programs, and gain a better understanding of genetic mutations to ensure earliest possible diagnosis and meaningful treatment options.
Need an immunologist? Find one of our JMCN Experts by using the search tool on our website.
In 2019, we introduced our no-cost genetic sequencing pilot program, “Jeffrey’s Insights,” for patients within the Jeffrey Modell Centers Network (JMCN) living with an underlying PI but no genetic diagnosis. The pilot was so successful that we expanded the program globally to our more than 400 JMCN centers in early 2020 to provide an opportunity for sequencing to more patients.
We created “Jeffrey’s Insights” to support our mission of earliest possible diagnosis. Proper genetic sequencing helps to identify specific genetic defects, enhances clinical management, and enables physicians to establish earlier and more effective treatment for their patients.
Nearly half of the patients who have participated in genetic sequencing through “Jeffrey’s Insights” experienced a change in outcome and almost all patients had their treatment(s) changed. These results are an indication of the benefits that genetic sequencing has for the PI community.
It is our hope that the results of “Jeffrey’s Insights,” now and in the future, will encourage better access to genetic sequencing for PI patients around the world and reduce the burden that so many families experience. To read our most recent publication about our genetic sequencing efforts, click here.
We are proud to support research for Primary Immunodeficiencies through grant opportunities that provide funding to advance science and save lives. To date, the Foundation has awarded over $6,000,000 in grant support for groundbreaking research.
Click through each tab to learn how apply for our three research grants:
1. Translational Research Program
2. Specific Defect Research Program
3. C.H.I.L.D.R.E.N! (Child Health Initiative to Lessen Disease through Research and Education Now)
To date, over 450 specific genetic defects have been identified, which have not only helped advance new therapies, but have also been instrumental in advancing our understanding of immunology. It is estimated that as many as 10 million people, if not more, are living with Primary Immunodeficiency worldwide. As such, the time is crucial to support research that will bridge basic scientific discoveries to the development of clinical applications that will impact overall health outcomes. Advancing research that enhances our understanding of the immune system represents one of the single greatest strategies that biomedical science has to offer to identify new therapies and will greatly benefit those living with diagnosed Primary Immunodeficiencies as well as the millions of people that remain undiagnosed.
Grants with the following focus will be strongly considered for awards:
The Jeffrey Modell Foundation encourages all international and U.S. investigators with the appropriate knowledge and research skill level to apply for this grant. Applications submitted by investigators with vast expertise in Primary Immunodeficiency, as well as young investigators with robust scientific merit will be considered. JMF encourages investigators who are not currently receiving funding from the National Institutes of Health to apply. Only one active grant per investigator is permitted at a time. See the list of historic award recipients and proposal titles here.
All applications will be comprehensively reviewed and evaluated by the Jeffrey Modell Centers Network Peer Review Research Committee. The committee will provide an impact score for individual applications based on:
The number of awards per cycle will be dependent on the strength and merit of applications received and the availability of funds. Individual awards may total up to $250,000 over a two-year period. Funds are not to exceed $125,000 per year per project. Total funds will only support direct costs and cannot be used for institutional overhead. JMF reserves the right to reduce the award amount for any application. To date, a total of 18 grants have been awarded throughout 10 grant cycles.
Note: application materials must meet the requirements below. Any applications that exceed the page limits will not be considered.
The Jeffrey Modell Foundation encourages submission of the application and all required materials to research@jmfworld.org. Applicants who prefer to submit a paper-based application may send all materials to the following address or by fax:
Jeffrey Modell Foundation
780 Third Avenue, 47th Floor
New York, NY 10017
Fax: 212-764-4180
All inquiries and logistical questions should be submitted to the Jeffrey Modell Foundation's Scientific Director at research@jmfworld.org.
The goal of the Specific Defect program is to support research that studies the mechanisms and presentation of specific defects of the immune system to gain a better understanding of the defects and their impact on overall health outcomes. The JMF patient database includes high numbers of various genotypes around the world, which provides an excellent platform for international collaboration. Investigators working in partnership with JMF will have access to this international database to contact other sites and coordinate joint studies.
The Jeffrey Modell Foundation encourages novel investigations to expand upon the current list of Specific Defect grant projects. Awards are granted on a rolling basis throughout the year. Each award amounts up to $50,000 over a two-year project period, with a maximum of $25,000 per year.
To date, there have been 38 Specific Defect Research Grants awarded. These include:
Applications for this program are accepted and reviewed on a rolling basis, so you may apply at any time. JMF encourages submission of the application and all required materials by email at research@jmfworld.org. Applicants who prefer to submit a paper-based application may send all materials to the following address or by fax:
Jeffrey Modell Foundation
780 Third Avenue, 47th Floor
New York, NY 10017
Fax: 212-764-4180
All inquiries and logistical questions should be submitted to the Jeffrey Modell Foundation's Scientific Director at research@jmfworld.org.
The purpose of the of c.h.i.l.d.r.e.n! grant is to support research focused on children living with PI throughout the world, while addressing healthcare disparities, especially in developing countries, through education, testing, diagnosis, and treatment. The focus of this grant program is to investigate immunological disorders, infectious disease, initiatives to decrease infant mortality and ultimately improve the quality of life of children affected by Primary Immunodeficiency globally.
Awards are granted on a rolling basis throughout the year. Each award amounts up to $25,000 per year, for up to two years, per grant, following peer-review and approval.
Application: please download and complete the application.
Research Proposal: please attach a detailed research proposal outlining the specific aims, background, purpose, and goals of the intended project. This proposal should not exceed 3-4 pages. Tables, figures, and graphs, etc. may also be included as supplemental documentation to support the proposal.
Budget and Budget Justification: a budget and detailed budget justification must be attached with the application. The budget justification should not exceed 2 pages.
Curriculum Vitae/Biosketch: please attach your current curriculum vitae or biosketch, highlighting experience as it relates to your proposed project. Please also list publications in order of relevance to the proposal. Please try to limit your CV or biosketch to no more than 5 pages.
Applications for this program are currently accepted and reviewed on a rolling basis, so you may apply at any time. JMF encourages submission of the application and all required materials by email at research@jmfworld.org. Applicants who prefer to submit a paper-based application may send all materials to the following address or by fax:
Jeffrey Modell Foundation
780 Third Avenue, 47th Floor
New York, NY 10017
Fax: 212-764-4180
All inquiries and logistical questions should be submitted to the Jeffrey Modell Foundation's Scientific Director at research@jmfworld.org
We are proud to create and disseminate educational materials for physicians and researchers, nurses, residents, post-doctoral fellows, and other sub-specialists within the field of immunology to encourage awareness and increase knowledge about Primary Immunodeficiency within the healthcare workforce. It’s our hope that these materials help to improve PI management, clinical recognition and care, and save more lives. We also share monthly “Updates from the Lab” on our blog.
Saving Children with Agammaglobulinemia (Salvando A Los Niños Con Agammaglobulinemia)
www.savingagammaglobulinemiapatients.org
An Online Catalog of Human Genes and Genetic Disorders
OMIM contains information on all known mendelian disorders and over 15,000 genes, with a specific focus on the relationship between phenotype and genotype.
OMIM is authored and edited at the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine. It is updated daily, and the entries contain copious links to other genetics resources.
Learn more at OMIM.org
The FILL (Following infants with low lymphocytes) study developed as an offshoot and direct result of newborn screening for SCID and T cell lymphopenia (NBS SCID) in the United States. This study intends to enroll infants who are initially identified during newborn screening (abnormal TREC result on SCID screening) and confirmed by a physician to have lymphopenia. The study will collect data on 200 infants who are enrolled by April 1, 2018. The FILL database was created and is maintained by the USIDNET, through a pilot grant provided by the Jeffrey Modell Foundation to the Clinical Immunology Society (CIS). Patient data can be entered into the FILL Database either by enrollment through an USIDNET center, or through direct physician referral to USIDNET. All patients enrolled in the study have to be consented through an IRB protocol.
We strongly urge you to enroll your patients with T cell lymphopenia identified by SCID newborn screening in the FILL study so that there is evidence-based data to better understand, follow and manage infants with lymphopenia.
Some exciting news just in! Rocket Pharma has disclosed exciting information about their gene therapy trial for patients with LAD-1 deficiency. Please read the summary, which describes the clinical trial, the disease, and the six month data showing the therapy was well tolerated and induced a restoration of CD18 levels.
WHIM (Warts, Hypogammaglobulinemia, Infections and Myelokathexis) is a rare autosomal dominant primary immunodeficiency disease caused by gain-of-function mutations in the chemokine receptor CXCR4. CXCR4 mutations induce increased leukocyte homing and retention in the bone marrow resulting in severe chronic neutropenia and lymphopenia.
X4 Pharmaceuticals is planning to sponsor a 52-week global Phase 3 study to evaluate the safety and efficacy of mavorixafor, a once-daily oral CXCR4 antagonist, in genetically confirmed WHIM patients who are aged 12 years or older. Mavorixafor is a first-in-class, oral, small molecule antagonist of the CXCR4 chemokine receptor that has demonstrated a favorable safety profile and dose-dependent increases in ANC and ALC in a Phase 2 study. Trial subjects will participate in a one-year trial with an opportunity to continue in the subsequent open label extension. Travel support to study sites will be provided.
To support confirming the diagnosis of WHIM, X4 Pharmaceuticals will offer genetic testing at no charge to patients meeting eligibility criteria suggestive for the disease. For information and support for genetic confirmation of your patients with suspected WHIM, please contact patientinfo@x4pharma.com.
To learn more about X4 Pharmaceuticals, visit their website, at x4pharma.com
This study developed as an offshoot and direct result of newborn screening for SCID and T cell lymphopenia (NBS SCID) in the United States. This study intends to enroll infants who are initially identified during newborn screening (abnormal TREC result on SCID screening) and confirmed by a physician to have lymphopenia. The study will collect data on 200 infants who are enrolled by April 1, 2018. The FILL database was created and is maintained by the USIDNET, through a pilot grant provided by the Jeffrey Modell Foundation to the Clinical Immunology Society (CIS). Patient data can be entered into the FILL Database either by enrollment through an USIDNET center, or through direct physician referral to USIDNET. All patients enrolled in the study have to be consented through an IRB protocol.
We strongly urge you to enroll your patients with T cell lymphopenia identified by SCID newborn screening in the FILL study so that there is evidence-based data to better understand, follow and manage infants with lymphopenia.
Chronic Mucocutaneous Candidiasis often results from an underlying immune deficiency that leads to abnormalities in a person’s control of fungal infections such as candida. Investigators at NIAID are seeking people with chronic mucocutaneous candidiasis (oropharyngeal, esophageal or vulvovaginal candidiasis) that are refractory or intolerant to standard non-intravenous therapies to participate in a clinical research trial. For additional information please contact Dr. Alexandra Freeman (freemaal@mail.nih.gov) or see https://clinicaltrials.gov/ct2/show/NCT02629419.
Nurses are our first line of defense in recognizing children who may suffer from repeated infections and missed days of school due to Primary Immunodeficiency. They play an essential role in helping our children to stay healthy, educated, and safe! We’ve compiled a list of resources for nurses to share with school communities, families, and others to help recognize the warning signs and encourage proper diagnosis and expert care.
Searching for a clinical trial? Check back regularly to see if there’s a fit for your specific case.
Software for Primary Immunodeficiency Recognition, Intervention, and Tracking
SPIRIT® is a cost-effective screening tool created for healthcare organizations, hospitals, and physician groups to help identify undiagnosed patients living with a Primary Immunodeficiency.
The SPIRIT® Analyzer Software enables healthcare professionals to notify patients who are at risk so that they may receive further assessment and/or testing to diagnose, treat, improve quality of life, and reduce healthcare costs more efficiently. SPIRIT® can screen and identify high-risk patients by mining electronic hospital records (EHR) and matching 1,400 ICD-10 codes and 17,868 pharmacy codes to the 10 Warning Signs of PI.
To download the SPIRIT® Analyzer Software, please send us an email at spirit@jmfworld.org. In your email, please include the following information:
Once we receive your email, we’ll send you a Memorandum of Understanding, confirming the guidelines of the SPIRIT® Analyzer Software.
Read the full manuscript, Calculation of a Primary Immunodeficiency “Risk Vital Sign” via Population-Wide Analysis of Claims Data to Aid in Clinical Decision Support, to get better acquainted with the power of SPIRIT®!
SPIRIT® is a Registered Trademark issued by the United States Patent and Trademark Office to the Jeffrey Modell Foundation. The SPIRIT® Software is provided as a public service. Any unauthorized usage, duplication, modification, or transfer of this material without expressed written consent of the Jeffrey Modell Foundation, is strictly prohibited.