Behind the Scenes of PANDAS Research

Behind every cure is a tremendous amount of financial support from government funding agencies like the National Institute of Health (NIH).

However, some diseases receive little to no NIH funding. Unfortunately, PANDAS is one of those diseases.

Here we will pull back the curtain and take a look behind the scenes to understand why the funding situation is so dire, what we can do about it, and how we correct this course of action together. There is a silver lining so bear with us.

Before we reveal details about the state of PANDAS research funding in the U.S., we must first explain why the pace of scientific progress is often very slow. Understanding this will help you grasp why many large NIH grants are for 5-year intervals.

The Wheels of Science Move Slowly

Below is a list of reasons that happen in every biomedical research lab. Each has the potential to halt the progress of a project.

Reasons for Slow Scientific ProgressImpact on Duration of the ProjectExamples
Negative DataVariable (months to years)Many experiments result in negative data. This is defined as data that provides nonconfirmatory results. For instance, if you want to test if gene X impacts a disease you might delete gene X in mice and observe what happens. If nothing happens then you have “negative data.”
TroubleshootingWeeks to months for resolutionExperiments may fail, particularly with new procedures. This can result in extensive troubleshooting to solve the problem.
Changes in Experimental SuccessVariable; (depends on identification time)Some experiments that used to work, might stop working. This could be that the pH of a buffer is off, or an enzyme stops working properly, etc.
Mycoplasma Bacterial ContaminationSignificant, (months to years)Mycoplasma is a type of slow-growing bacteria that is resistant to the antibiotics placed in tissue culture (media) food. This type of contamination can change the way cells in a dish behave and can go unnoticed for years.
Breeding Issues in Animal ModelsSignificant, (months to years)Sometimes important mice in your mouse colony can stop breeding. If this isn’t caught it can result in the loss of specialized mice leading to a significant setback.
Data Collection for PublicationsExtensive, may take 5 years or moreModern-day science papers published in top-tier journals have a lot of data. This data can take 5 years or more to collect.
Human Clinical Trial ChallengeExtended timelines for participant recruitment and setupIdentifying proper cohorts, ensuring proper controls, and recruiting control subjects in specific geographical areas; obtaining ethical approvals

Publishing

Publishing Stage Duration Description Manuscript Preparation 1 month to 6 months Involves data analysis, experiments, formatting, and paper writing. Scientists aim for prestigious journals, increasing preparation time. Manuscript Submission 2 weeks to 1 month Submission to top-tier journals for review. Editors assess data; if deemed suitable, it undergoes review by a panel of 3 expert reviewers or may be rejected outright. Manuscript Review and Editing 3 months to >1 year Editors decide on review after weeks; if accepted, reviewers may take several months. Rejections may restart the process. If accepted with revisions, the incorporation process spans >1 year.

Scientists always try to publish in prestigious top-tier journals. The better the journal the longer it takes to publish.

Below reveals how long it takes to publish a scientific manuscript in the biomedical sciences.

Publishing StageDurationDescription
Manuscript Preparation1 month to 6 monthsInvolves data analysis, experiments, formatting, and paper writing. Scientists aim for prestigious journals, increasing preparation time.
Manuscript Submission2 weeks to 1 monthSubmission to top-tier journals for review. Editors assess data; if deemed suitable, it undergoes review by a panel of 3 expert reviewers or may be rejected outright.
Manuscript Review and Editing3 months to >1 yearEditors decide on review after weeks; if accepted, reviewers may take several months. Rejections may restart the process. If accepted with revisions, the incorporation process spans >1 year.

How Much Does a Study Cost?

Each study can cost up to $100K per year for several years. This includes paying the salary of postdocs or graduate students, reagents, and lab equipment.

The Importance of Receiving NIH Grants to Fund PANDAS Research

The success of any scientist, known as a principal investigator, or PI (green box above), comes down to three things:

  • How many active NIH grants do you have
  • How often do you publish peer-reviewed manuscripts
  • The prestige of the journals in which your research manuscripts are published

In other words, success is not measured by how many lives you have impacted in your career or how many therapies you have developed. Don’t get us wrong, the select few that have those achievements are considered very successful scientists but for faculty members (PIs) to keep their jobs and be awarded tenure they must successfully obtain grant money and publish scientific manuscripts.

Why are NIH Grants Prioritized?

Direct Costs

NIH grants come in different varieties. The most common type of NIH grant is called an “R01”. These grants are usually worth $500,000 over 5 years. The $500,000 is used to cover the direct costs of running a lab such as:

  • Salaries – paying the postdoctoral fellows (~60K/yr), graduate students (~28K/yr), and lab technicians (~40K/yr) to perform the work and run the day-to-day operations.
  • Supplies – such as lab equipment, reagents, antibodies, mice or tissue culture cell lines, etc. These costs are typically ~15-20K/year per lab member.

A single R01 usually covers a single post-doc and possibly a graduate student’s salary and supplies to perform the experiments for 5 years.

Indirect Costs

In addition to direct costs, NIH grants also cover indirect costs. This is money earmarked to the institution used to:

  • Facility costs and insurance
  • Administrative staff, HR departments, maintenance crews, veterinary staff, etc.

Indirect costs can be 100% or more of the direct costs depending on the institution. For instance, if a PI is awarded a $500,000 grant (for direct costs) from the NIH, the institution also receives an additional $500,000 (for indirect costs).

Nonprofit Funding Structure

Grants from nonprofit organizations such as the PANDAS Network, only cover direct costs.

The result? Individuals who chair the research department put pressure on their faculty members to prioritize obtaining NIH grants so the academic institution can stay viable.

Large Nonprofits Compared to the PANDAS Network

Larger nonprofits such as the Micheal J Fox Foundation or the Alzheimers Association have the financial feasibility to make large, multi-year, contributions directly to the PIs. These nonprofit grants allow scientists enough time and money to make big impacts by publishing papers and developing novel strategies to treat diseases.

The PANDAS Network, however, is not a large nonprofit. Our limited funds and resources only allow us to fund small research grants and postdoctoral fellowships for one year (see image above). However, this small, yet consistent financial impact HAS moved the needle in the research would.

PANDAS Network Scientific Impact

Thanks to the parents who have supported the PANDAS Network, and of course of scientific advisory board for their guidance, these small grants have made a big impact including discovering that:

  • Certain regions of the brain are inflamed in a PANDAS/PANS patient cohort.
  • The specific immune cells found in the tonsils, adenoids, and blood in PANDAS/PANS patients.
  • Immunomodulating therapies such as IVIg diminish symptoms in a PANDAS/PANS cohort.

For a more comprehensive list of the PANDAS Network impact start here and scroll down to “our impact” section.

Are Scientists Specializing in PANDAS Research Being Awarded NIH Grants?

There are only two scientists who currently have NIH funding to study PANDAS totaling a combined $1.3M.

  • Dr. Chris Pittinger, Yale University
  • Dr. Dritan Agillou, Columbia University

Here are a few scientists specializing in PANDAS research who are not receiving PANDAS funding.

  • Dr. Madeline Cunningham, The University of Oklahoma Health Sciences Center
  • Dr. Harley, Georgetown University
  • Dr. Jenny Frankovich, Stanford University
  • Dr. Elizabeth Mellins, Stanford University
  • Dr. PJ Utz, Stanford University
  • Dr. Brian Kobilka, Stanford University
  • Dr. P. Kiela, University of Arizona
  • Medical Team at Dartmouth College

How does PANDAS Funding Compare to Other Pediatric Neurological Diseases?

There are 2 active NIH research grants awarded to 2 scientists studying PANDAS for a combined total of $1.3M. Here is how that compares to other pediatric neurological diseases/mental health conditions.

How does PANDAS funding compare to adult neuroinflammatory diseases?

The amount of money invested in PANDAS research from U.S. government funding (2 grants totaling $1.3M) agencies pales in comparison to the amount of grant money awarded to investigate adult neuroinflammatory diseases.

Why is the lack of NIH funding a problem for PANDAS research?

This article is not intended to be “doom and gloom”. However, this lack of serious PANDAS/PANS funding from the NIH has real long-term consequences that children affected by PANDAS/PANS and their families must be aware of.

Minimal PANDAS Funding Means Minimal Scientific Progress.

Grants that keep a research project funded for 5 years help the PI’s pay for:

  • talented young scientists
  • reagents
  • lab equipment (if needed)

These costs can be close to $100K/year for the salary of a post-doctoral fellow, lab reagents, and new equipment.

PANDAS Network Current Funding Model

The PANDAS Network awards researchers and postdoctoral fellows with $50K for one year of work, which only funds the salary of a post-doc. Since these awards are for one year, the post-doc and/or the PI must keep applying for more grant money each year to keep the study alive.

Each grant application requires a tremendous amount of effort to obtain, which slows the progression of the science.

Minimal Funding Translates to a Lack of Opportunities for Emerging Young Scientists.

The future success of any research field depends on talented young scientists to “fill the void” of retiring scientists. However, many young scientists are not studying PANDAS/PANS because their PI’s (lead scientist) can’t obtain adequate grant money to keep the PANDAS-related project alive.

Instead, post-docs and graduate students must study successfully funded scientific projects in the lab, which are not directly related to PANDAS.

Therefore, a notable deficiency in funding for PANDAS research creates minimal opportunities for emerging young scientists to study PANDAS, posing the potential threat of a scarcity of PANDAS scientists in the future decades.

How are Labs Without NIH Funding Able to Study PANDAS?

Many biomedical scientists do not exclusively focus on PANDAS. The reason is that PANDAS funding mechanisms are sparse. Therefore, labs must focus on studying another disease where more funding is available.

For instance, Dr. Madeline Cunningham at the University of Oklahoma Health Sciences Center is a world-renowned PANDAS specialist. However, her primary studies are on autoimmunity and infection in inflammatory heart disease. Her postdoctoral fellow, Dr. Chandra Menendez is currently the primary lab member who studies PANDAS. She explains, “Funding [for PANDAS research] is few and far between. Many labs including our own must study other diseases to stay in business.” Labs like these are dependent on grants from nonprofit organizations such as the PANDAS Network. “Without grants from these smaller nonprofits, I wouldn’t be able to study PANDAS.”

Scientists must also constantly campaign for money from large donors in their free time. This detracts from their ability to focus on the science and publish papers. Our team of PANDAS researchers works very hard for our families!

The PANDAS Network Keeps PANDAS Research Moving Forward

The PANDAS Network is a 501(c)(3) that collects tax-deductible donations from parents and other people affected by PANDAS/PANS and distributes that money to deserving young scientists.

Each grant proposal is reviewed by a panel of scientists who are experts in PANDAS/PANS. Each grant is scored and the winner is picked based on the most deserving applicant with the potential to directly influence the lives of people with PANDAS.

Even though the PANDAS Network has yet to be able to fund large research projects like most nonprofits, we have been able to fund meaningful science that has improved our understanding of PANDAS/PANS. This is all thanks to the parents and the researchers, not the NIH.

Support PANDAS Network by making a tax-deductible donation, enabling us to independently fund crucial research. Your contribution empowers the next generation of PANDAS scientists and clinicians, ensuring a direct impact on advancing discoveries and treatments. Together, let’s drive progress and make a difference!