PAUL WALKER SCHAFFEL FOUNDATION

The Paul Foundation recognizes the unique needs of the adolescent and young adult population and is proud to be partnering with the Lymphoma Research Foundation on an initiative that will address the special needs of this population.

Why are we doing this? An estimated 67,000 adolescents and young adults (AYA) are diagnosed with cancer annually. Lymphomas now represent roughly 5% of all new malignancies diagnosed in the United States, in the last major analysis conducted by the National Cancer Institute, while they account for 19% of all cancers in 15- to 29-year-olds. Young people with lymphoma face a difficult and complex process as it relates to their diagnosis and treatment.

Factors that may account for these challenges and related outcomes among AYAs include:
-Delayed diagnosis
-Limited understanding of the biology and etiology of those cancers which impact this population
-Low access to and participation in clinical trials
-Unique psychosocial and supportive care needs
-Long-term healthcare concerns, including long-term treatment side effects and secondary cancers

Coupled with the fact that the more than 67 subtypes of lymphoma are complex diseases and notorious for recurrence, AYAs who receive a lymphoma diagnosis face unique challenges in understanding and treating their cancer, as well as an often difficult transition to post-treatment survivorship.

What are the areas of emphasis for the Initiative? The Paul Foundation is proud to sponsor the Lymphoma Research Foundation (LRF) in their development of a programmatic and awareness initiative in 2014 that will draw attention to the needs of the AYA lymphoma population; educate the key constituencies on the disease and the impact it has on this population; and provide education, resources and programming that will meet the unique needs of AYAs who receive a lymphoma diagnosis. We know that the research arms and policy/legislative component of the initiative will help make a difference for many others. LRF is the nation’s largest non-profit organization devoted to funding innovative research and serving the lymphoma community through a comprehensive series of education programs, outreach initiatives and patient services.

Summary:
The Paul Foundation recognizes that the special needs of the Adolescent/Young Adults in scientific research have been significantly underfunded. We chose to partner with the Lymphoma Research Foundation to create a new mechanism for research and to invest $100,000 (over two years) to jump start this program. The Scientific Advisory Board of the LRF will meet on April 25th, 2014 to review proposals for correlative clinical/translational studies in adolescent/young adult (AYA) lymphomas. A stipulation of this program was that applications to this initiative must be an adjunct to a major NCI cooperative group research project in lymphoma relating to work in the clinical setting or involving primary lymphoma patient samples.

Innovative research by definition may uncover new questions and new areas requiring investigation. Basic funding often does not allow for additional, correlative studies to explore these areas. Adolescent/young adult patients with lymphoma are an understudied population that would particularly benefit from adjunct studies. The intention of the current request for proposals is to fund adjunct studies to complement and synergize with ongoing lymphoma clinical trials within the NCI Cancer Cooperative Groups.

Priority areas identified for funding are:
Genomic/genetic analysis of lymphoma. What are the critical pathways involved in AYA lymphomagenesis and what are the molecular predictors of tumor behavior?
Identification of biomarkers or biologic features. What biologic features of lymphoma and which biomarkers are predictive of the outcome of AYA lymphomas?
Host-Tumor Interactions. How does the immune system modulate lymphoma? Does the tumor microenvironment influence resistance to therapies?
Heterogeneity of lymphoma behavior. What are the molecular, biologic, immunologic and micro-environmental factors determining the variability in clinical behavior of AYA lymphomas? In what ways do lymphomas in the AYA population differ from those occurring in pediatric or older adult groups?
Drug Resistance. What are the molecular, biologic, immunologic and micro-environmental factors determining resistance to key anti-lymphoma agents?
Imaging. What are common imaging characteristics of AYA lymphomas? What imaging modalities offer an accurate method for staging AYA lymphomas?
Enhancement of Accrual of patients to clinical trials. Despite a plethora of attractive agents for clinical trials, progress is slow due to the low accrual rate of patients to clinical trials in the USA. Convincing strategies with measurable endpoints documenting improvement in lymphoma trial accrual will be considered for funding.
Novel therapies. Projects focused on new therapeutics should explore and elucidate the mechanisms of action.
Quality of Life. What factors impact the quality of life of AYA lymphoma patients?
Late Effects and Survivorship.