Patient-Led Research Fund Q&A

Questions and Answers

A webinar was held on September 1st to answer frequently asked questions; the recording can be found here, passcode: 3xJAT=jA. 

Cryptocurrency and Disbursement
Eligible Projects
Evaluation and Awarding Grants
Patient Involvement
Other Project Details

Cryptocurrency and Disbursement

My organization cannot accept cryptocurrency directly. Can I still apply?

Yes. Find a non-profit that can act as an intermediary to accept cryptocurrency from Balvi, and then donate to your organization in fiat currency. Open Medicine Foundation and Dysautonomia International have graciously offered to be intermediaries at no additional cost beyond the exchange fee their organizations pay to convert cryptocurrency to cash. Open Medicine Foundation estimates a 1.5% exchange fee. Dysautonomia International estimates a 2% exchange fee. 

Please consider these fees when you are putting together your budget.

Open Medicine Foundation: email or call 631-896-1293

Dysautonomia International: email or call 631-202-1720

If your organization cannot accept funds through an intermediary directly, you can set up a fundraiser to accept the funds. Please consider any fees the fundraising platform may charge when putting together your budget.

Should I include exchange, withdrawal, and transaction fees in the proposed budget?

Yes. We estimate 1%-5% in fees to exchange USDC. Exact fees will depend on the service you are using (e.g. Coinbase or Givingblock).

If you own your organization, there is a straightforward way to automatically convert USDC to any currency upon receipt through Coinbase Commerce at 1% fee. Please see our USDC Exchange Guide for doing this yourself.

I am in a state/location which does not allow crypto accounts. Is there an alternative?

Find a nonprofit that is not in Hawaii who can accept cryptocurrency, as stated above.

Can the intermediaries donate outside the US?

Yes. OMF uses Transferwise to do so. 

What will be the structure of fund disbursements?

It depends on the size of the grant. If it’s over $1M, Balvi may consider disbursing in tranches. Generally, Balvi will disburse the full amount at one time.

[Return to the top]

Eligible Projects

What types of projects are not eligible?

Research proposals that are ineligible are those that are exclusively survey-based, prevalence studies, qualitative research, studies solely collecting symptoms or experiences, occupational therapy, or behavioral research. 

Other studies not eligible for funding are studies into therapies that have already been well-evaluated in similar cohorts, do not result in positive outcomes, and are known to cause harm, including studies that use graded exercise therapy and cognitive behavioral therapy. 

What type of project will be prioritized?

We especially encourage and prioritize proposals on areas of research identified by patients as critical. In no particular order, these include (but are not limited to):

  • the role of hormones in symptom expression
  • studies on mechanisms driving connective tissue disorders and connective tissue damage in infection-associated diseases, and therapeutics to repair and strengthen connective tissue and structural spinal conditions
  • overlaps with inflammatory conditions like endometriosis
  • how the menstrual cycle impacts the illness, and the impacts of pregnancy on illness
  • antivirals including antivirals against reactivations like EBV
  • addressing and understanding vascular dysfunctions like clotting 
  • addressing and understanding mechanisms of cerebral and general hypoperfusion and hypovolemia
  • mitochondrial treatments and metabolomics research
  • treating and understanding sleep issues, unrefreshing sleep, and circadian rhythm dysfunction
  • addressing brain fog, neurocognitive issues, and neuroinflammation
  • addressing and understanding immune dysfunction and mast cell activation
  • treating autonomic and nervous system dysfunction
  • studying mechanistic overlaps and the relationships between related and comorbid illnesses
  • additional triggers of ME/CFS and connective tissue disease, including mold exposure
  • treating and researching post-exertional malaise (PEM) and fatigue  

How might PLRC work together with other funding orgs and biobanks?

We are open to collaborations and encourage the use of existing biobanks, though will not mandate these collaborations. We have a value of being open source and sharing results with the community. 

Are there any restrictions on the type of organization/institution/company that can apply? Are companies eligible to apply? 

There are no restrictions as long as all of the necessary ethics/IRB approvals are in place; companies are eligible. 

How are collaborative applications between multiple centers handled, does there have to be a main awardee and then subcontracts, or can there be co-applicants?

Any set up that works best for you is fine with us.

Would you support analyses of existing samples that have already been collected but not analyzed, or are analyzed in a different way to answer new questions?

Yes, as long as these are biomedical samples. 

It seems that you are expecting a 1 year project design, is that correct? Will you allow for multiple year projects?

We are trying to prioritize 1 year design projects but will allow for multiple year projects, and expect to fund a few that are over 1 year.

Are you expecting a global allocation or distribution of funds per region of the world?

We hope to have a global reach with this fund, but do not have a specific allocation per region of the world.

Is there any conflict for having a study have multiple sources of funding, including from the Patient-Led Research Fund?

No, studies can receive grants in addition to the Patient-Led Research Fund grant if that is needed to fully fund the research.

[Return to the top]

Evaluation and Awarding Grants

Can you discuss your review and scoring criteria? 

Each application will be evaluated on the following criteria:

  • Study goal
  • Approach/study design
  • Historically informed/building off existing post-viral and infection-associated research
  • Impact and scalability
  • Diversity, intersectionality, and open science
  • Ethical standards
  • Approach to engaging patient input in study design and consideration of patient burden
  • Involves a research area of patient interest, listed above. Encouraged but not required. 

How many grants are you expected to fund? Number of applications expected?

We are accepting proposals between $50k to $1.2million in cost, so awarded grants will depend on number of applications received and amount requested. We anticipate between 5-15 grants to be funded.

We expect between 20-60 applications.

Will the reviewers know the identity of the applicant?

The applications will be anonymized during scoring.

[Return to the top]

Patient Involvement

“Each awarded project will come with two paid (by PLRC) patient-researchers, who will act as consultants on your study for several hours a month.” Can you explain how the patient-researchers will be recruited and matched with different grantees?

The patients will come from the PLRC network. These are patients who have Long COVID, and some may have a data or research background and have consulted on projects like this before. It will in part be up to your project for how to best use these patients, but we want to see patient engagement happen across the study design at every stage.

Will you be assigning the 2 PLRC paid consultants?

Yes, we can look for patients with specific skill sets that you need.

You mentioned that patients are coming from the PLRC network. Is this obligatory, or is there a possibility to let patients, outside this network, participate?

We are flexible on this point. If you have a lot of patient involvement already across your study design, reach out to us to let us know.

Is there a mechanism or path for us to recruit patients via patient-led nonprofits? 

We can post calls for recruitment within our network but will not be conducting active recruitment due to lack of capacity and funding to do so.

[Return to the top]


Are indirect costs permitted in the budget? If so, at what rate?

Yes, at a maximum of 15%. 

Are there any restrictions for eligible costs?

No, only that indirect costs are a maximum of 15%.

Will you be allowing childcare expenses for patients and/or researchers? 

Please include this in your budget proposal if desired.

Will you cover local travel costs (UberHealth) for unemployed patients? Many of these patients are now unemployed. Costs are generally $15-20 per trip.

Please include this in your budget proposal if desired.

Do you expect follow on funding after the first project?

We do not expect to receive follow on funding.

Will no-cost extensions be allowed for 1 year projects that extend to a second year for unforeseen circumstances, such as slower than anticipated participant recruitment?

Yes, no-cost extensions due to unforeseen circumstances will be allowed.

How much detail do you need in the budget section?

Include as much detail as is needed but summary of buckets, if self-explanatory, will be sufficient

[Return to the top]

Other Project Details

What are the expected start dates?

We expect studies to begin between November 2022-January 2023.

Are there any restrictions to the intellectual property developed during the course of the project? Will the entity own the entire IP?

Neither the funder nor PLRC has any claim to the final property. Projects that have open source results will be looked upon favorably.

Do studies need to require a positive PCR test for recruitment?

We request that studies do NOT require a positive PCR test for inclusion in the study, or at minimum include a subcohort of clinically diagnosed or suspected infection.

[Return to the top]

Skip to content