Lalita Health (NORD Students for Rare)

Our website- https://lalitahealth.wordpress...

Humanity's first breakthrough with cancer, our understanding of chemotherapy came from Dr Farber's research with pediatric leukemia. Today, less than 4% of overall cancer research funding is directed towards pediatric cancers. They have the highest and longest progression free survival rates. The link between learning loss and pediatric cancers has not been explored. With increased quantity of life should come an increased quality.

LH uniquely blends scientific communication, data analytics and mentorship  to translate basic research findings into clinical practice, it is essential that information about variations in the genome are communicated easily and unequivocally. We achieve this through the gene database. In this way, we serve pediatric cancer patients, their families, researchers and doctors. 

This is a volunteer driven, non-profit venture aiming to preserve the childhood of cancer survivors. Our team consists of long-term rare disease advocates from  three chapters of the NORD's Students for Rare. 

About 10,500 children in the United States under the age of 15 will be diagnosed with a cancer in 2021 (American Cancer Society). This equates to 1 in 285 will be diagnosed with cancer before they reach the age of 20. This classifies pediatric cancers as a 'rare disorder' (American Cancer Association). 

Less than 4%of the federal budget for cancer research is dedicated to childhood cancers. With this comes the usual problems associated with the rare disease space- a lack of resources for the patients and families, lack of funding and research as well as a lack of awareness and education about the disease. Parents frequently cross state lines for care and insurance companies are held nonaccountable. Scientific literature and research looking into learning loss and pediatric cancers are severely lacking.

Adult and pediatric cancers have different mutations and pathways to be researched, there is a need to move away from precision to personalized medicine in the childhood cancer space.  While research for pediatric cancers is present, the data is difficult to disseminate and is put together by different sources, there is a clear need for an all-encompassing and more accessible resource. 

Incidence and survivability of pediatric cancers are both on a steady rise, with an increased quantity of life, should come an increased quality. Under Lalita health, the 'Full Hearts mentorship program' for pediatric cancer patients is designed to fill the need for research correlating education and pediatric cancer survivors, providing them the tools and mentorship to excel. While doing so, we hope to measure the educational attainment of childhood cancer survivors and positively impact the same. We are currently partnering with family support resources such as 'Special Siblings' and 'Rare Cancer research foundation.'

'Lalita' is a Sanskrit word for 'playful.' Lalita Health is an all-encompassing resource for pediatric cancers, depicting the genetic architecture of pediatric cancers with statistical evidence. To translate basic research findings of pediatric cancers into clinical practice, it is essential that information about mutations and variations in the genome are communicated easily and unequivocally.

To move from precision to personalized medicine in pediatric cancers, Lalita Health is a first step- a repository of information to create actionable insights at a genetic level. The team has read and compiled around 50 scientific papers and scoured 7 databases to create this comprehensive Gene database. 

Our website- https://lalitahealth.wordpress...

Our team consists of long-term rare disease advocates from three chapters of the National Organization for Rare Disorders (NORD)'s Students for Rare. We share a passion to create a better space for pediatric cancer patients and started out by creating a mentorship program titled "Full Hearts" which still serves as the backbone to Lalita Health.  

Lalita Health is a patient-centric approach to the challenges that pediatric cancers can pose. Our overall goal in putting together this resource is to depict the genetic architecture of pediatric cancers through an integrative gene network approach by collating existing scientific literature, data analytics, and statistical evidence from a variety of sources. The genomic landscape has shown a lot of patterns, we attempt to convey this information through effective scientific communication for patients and their families. 

Leverage analytics to improve the detection and diagnosis of rare diseases- LH has blended scientific communication and data analytics to create a comprehensive gene database of the genes that most commonly mutate in pediatric cancers. We have created gene networks, donut  and bubble charts for every gene and subcategory of pediatric cancer. These analytics will be used to uncover patterns and facilitate research. 

The Full Hearts mentorship program is designed to promote community and connection among the pediatric cancer community and advocates. The ultimate goal of LH is to unlock collaboration between researchers, patients and doctors to improve patient outcomes

The LH website has been designed as a prototype that we would like to expand upon and make more interactive. This website currently serves as our proof of concept- https://lalitahealth.wordpress...

This precursory research helped us develop gene networks for pediatric hematopoietic malignancies, solid and brain tumors. We have attempted to look through scientific literature and trace patterns. The implementation of Full hearts at a small scale has helped us gain insight into the needs of patients and families. We are in the initial stages of prototype development. 

Our next steps will be to partner with other organizations to provide options for telehealth, genetic counseling, access to clinical trials, and Next-Generation sequencing. The COVID-19 situation has exemplified the need for easy access to data, information, and care. We have taken into account the difficulties faced by the pediatric cancer community during the pandemic. 

There are a number of open source databases which outline the NGS data for pediatric cancers, but for someone with a non scientific background, they are difficult to decipher. We have looked into seven such databases and read over 50 scientific papers to curate this pediatric cancer gene database. We have uniquely blended scientific communication and data analytics to communicate the results to a general audience.  

The relation between learning loss and pediatric cancers have long been overlooked , Full Hearts will fulfill this necessity. Even in the scientific and research fronts, pediatric cancers have a different genetic makeup than their adult counterparts. Recognizing this and moving to personalized treatment for pediatric cancers through genetic counseling and tele health options will be our long term objective.

During our customer discovery interviews and interactions with pediatric cancer families, there was a clear unmet need for an all encompassing resource in the pediatric cancer space. Especially in NC, despite the growing number of biotechnology startups in the Triangle area,  pediatric cancer support groups and genetic testing are surprisingly numbered. Duke offers Whole Exome sequencing options for select patients and can create a personalized plan for treatment. (You can see NORD at NCSU's interaction with Dr Vandana Shashi [from Duke university] about WES and NGS sequencing in pediatric cases here)

[[LH instagram (@lalitahealth)- https://www.instagram.com/lali...

https://lalitahealth.wordpress...

We have created this website as a prototype to our overall vision, we have used the wordpress platform and the student version of Tableau to design analytics. 

Six decades ago, the first major breakthrough in the treatment of cancer came when Dr. Sidney Farber used an experimental drug to treat leukemia in children. Some leukemias went into remission — a medical first. Chemotherapy was born, revolutionizing the care of both children and adults with cancer.

Now, more than half a century later- pediatric cancers lack severely in both awareness and research- it is important to revive gene targeted therapy in childhood cancers and create collaborative networks to exchange information. Lalita health is our step in this direction.

The need for research  correlating learning loss and pediatric cancers- 

1. Molcho, Michal et al. “Educational attainment of childhood cancer survivors: A systematic review.” Cancer medicine vol. 8,6 (2019): 3182-3195. doi:10.1002/cam4.2154

2. Hay, Genevieve H, et al. “Students with Pediatric Cancer: A Prescription for School Success.” Physical Disabilities: Education and Related Services, vol. 34, no. 2, 2015, pp. 1–13., doi:10.14434/pders.v34i2.19643. 

The genomic landscape of pediatric and adult cancers being different- 

1. Kattner P, Strobel H, Khoshnevis N, Grunert M, Bartholomae S, Pruss M, Fitzel R, Halatsch ME, Schilberg K, Siegelin MD, Peraud A, Karpel-Massler G, Westhoff MA, Debatin KM. Compare and contrast: pediatric cancer versus adult malignancies. Cancer Metastasis Rev. 2019 Dec;38(4):673-682. doi: 10.1007/s10555-019-09836-y. PMID: 31832830.

The importance of oncology communication- 

1. The importance of science communication in cancer research with Martin Christilen

Creating a gene database for pediatric cancers-

Jeanquartier, Fleur et al. “Use case driven evaluation of open databases for pediatric cancer research.” BioData mining vol. 12 2. 15 Jan. 2019, doi:10.1186/s13040-018-0190-8

The information that is displayed in the gene database, under every hyperlinked gene has been peer reviewed and verified to make sure the research that is being presented is up to date and accurate. 

The Full Hearts program as the site verifies has strict standards to abide by to be a mentor and the first few sessions between a mentor a mentee will be monitored, both group and individual sessions are offered to build community and skills. 

Number of people Lalita Health currently serves: 6 in NC

Number of people Lalita Health will serve in one year:10-50 in NC 

Number of people Lalita Health will serve in five years: 150-300 in NC 

Our goal is to reach a smaller number of patients in our local communities in a customized. high impact manner first and then scale up with partnerships. 

The Lalita Health website and analytics is at a readiness level of 2. During this stage we are still researching and expanding the gene database while collecting data and information from the Full Hearts Program. The Full Hearts program is being implemented simultaneously in NC and California, this is achieved virtually. 

In the course of five years, we hope to partner with clinicians , academic organizations and hospitals to create a repository to provide the pediatric cancer community with actionable insights at a genetic level. This will be inclusive and cover a number of different patient groups. 

Telehealth and genetic counseling options could enable an early diagnosis and will be incorporated around the two year mrk. An early diagnosis can offset treatment costs and save lives. 

In the long run, we would like to use DNA sequencing mechanisms to create personalized treatment plans and medicines for pediatric cancers. We would like to provide researchers, doctors and hospitals with comprehensive diagnostic solutions for pediatric cancers. 

While curating a gene database, we intend to continue serving our local rare disease community and fighting for health equity.

Our impact goals for the next year would be to branch out and start to create partnerships that facilitate genetic counseling and tele health options for pediatric cancers. We will also be working to fine tune the analytics, expand the gene database to be more interactive and work towards making the information more accessible. 

Our impact goals for the next five years are to partner with and offer DNA sequencing methods (NGS, WES and WGS) to create personalized treatment plans for pediatric cancers over precision medicine. Our main partnership would be with Duke University  to achieve the same. 

The big picture aim is to develop a nonprofit with a patient centric approach which leverages technology to improve access to care and health outcomes for pediatric cancers.

Short term social impact of LH will be measured directly with the implementation of the Full Hearts program, as the number of mentors/ mentees that sign up and overall feedback.  Analytics on the website and SEO match will be used to determine the success of the gene database. peer reviews from more of our professors and advisors will also be taken into account. As a starting point, our informational interviews with parents revealed that they host a toy drive annually which was stalled due to COVID, we would like to reinitiate and help them host this annual event. 

Long term social impact is measured by retention in the Full Hearts program and long term feedback from the same. We will also measure success as partnerships with relevant organizations. (Examples- essential to partner with physicians to validate the diagnostics and partner with key opinion leaders to build trust of the device). The interactivity of our website and the analytics will be another factor. The Federal National Pediatric Research Networkis a tool we hope to use early at this stage. 

The number of pediatric cancer patients and families that we are able to service will be the ultimate marker of our success. 

8 people currently work on our solution team part time-

Team members- Neha Suresh, Akshay K Sridhar, Neha Gondra, Katelyn McInerey, Briella Jackson  and Charlotte Pete

Advisors- Dr Kurt Marsden, Dr Kenneth Adler

Lalita health is a collaborative effort between three Students for rare chapters of NORD (National Organization for Rare Disorders)- NORD at NCSU, Students for Rare at UNC Chapel hill and Mission San Jose High school came together to realize a common passion of leaving a positive impact in the pediatric cancer space. We started with the Full Hearts program and built Lalita health out from there as we discovered a need for this resource. 

We are long time rare disease advocates, all of whom have been personally affected by how under represented this cause is, this has prompted us to start our respective organizations. We understand and empathize with the rare disease journey and would like  to see treatments , policies and research changed for the better. 

Our leadership team is filled with rare disease advocates and representatives whose lives have been personally affected by the lack of information in the rare disease space. This effort is founded and lead by women with a shared passion. As an early stage non profit, we center the rare disease community and continuously work to address their needs. 

As an organization, we recognize the need to address the disproportionate burden of rare diseases faced by underrepresented identity groups- especially in a community as close knit as the rare disease space. A continuous, diligent effort is being made  to keep our organizations safe, accessible  and equitable. Health justice and equity is a common thread between our members as well and will always be at the heart of our message. 

I had a rare disease as a child, symptoms were first seen at 10 years old and I got a diagnosis at age 16. This six year journey was filled with hospital visits, imaging tests, specialist visits and severe financial stress. I was fortunate enough to get a fairly benign diagnosis which a single surgery could cure. 

As a child who grew up in this situation, I met other children whose diagnoses were not as fortunate as mine. Personally I had to give up a range of interests and opportunities at the time. I would really like to create a meaningful program that preserves some of their childhood. 

Another team member has started an organization called Special Siblings to support siblings of children with special needs, in this way all of us are positioned to leave a positive impact in the rare disease space. 

The rare disease community is a small and close knit one, being a social entrepreneur in this space demands that we take advantage of the impact awards that are offered to us. In addition, we are seeking community of social entrepreneurs with a similar mission and vision. We are also seeking out representatives in the pharmaceutical industry for the rare disease community to be proportionately represented. 

If funded, we would like expand on the gene database , make it more interactive and integrate more analytics. We would also like to incorporate genetic counseling, tele health options and information on clinical trials. Our ultimate goal would be to transition pediatric cancers from precision medicine to personalized treatments because as recent research has conveyed, pediatric cancers have unique mutations and pathways that are different from their adult counterparts. 

We are looking for resources necessary to better hone our service. For us, the Horizon Prize was an ideal opportunity that was aptly timed. We value feedback and support on refining our impact metrics. We are excited to gain impact based education specific to the rare disease space. 

We are interested in mentorship, especially in resources for R&D (e.g. financial resources, access to clinical centers, partnerships with clinicians and biotech companies), and access to an experienced network for support in developing impact metrics. 

In Technology, we would like partnerships with biotechnology startups that work with Next Generation sequencing to make better visualizations of the data that is available to us. Lastly, we would like to seek partnership with academic and pediatric cancer institutions to market Full Hearts and Lalita health to those who need it most.

We intend to partner with clinicians to create a more accurate repository of patient profiles. Partnership with a pediatric cancer programs and institutions can aid us in achieving this goal. We would like to reach key opinion leaders and the support of organizations such as American Cancer Society, American Children's Oncology group and National Cancer Institute.

We have been able to utilize many university networks to advance our work  via general entrepreneurial support. We are interested in additional university partnerships with the Broad Institute of MIT and Harvard, Washington University etc.

If there are Horizon representatives/MIT faculty/ Solve Member who are working in a similar area interested in our cause or available for mentorship, we are constantly on the lookout for opportunities to collaborate.