Ocular Melanoma Patient Registry

Last week the Melanoma Research Foundation updated their web page about the CURE OM Patient Registry.

Many visitors to the page were a little shocked to discover that multi-year funding has been budgeted at approximately $300,000 per year!

I did a little research with folks I am affiliated with, and learned about NORD’s IAMRARE™ Registry platform.

Here is a link to the informational flyer:

Why would a charity take over the responsibility for a rare disease patient registry, go on to pretty much exhaust the 100K they raised to launch the program, then plan a system costing $300,000 a year, when they could instead, use a platform which already exists through NORD which would cost closer to $40,000 a year?

Update on MRF Financials

So, progress on transparency! MRF has posted their 2016 tax form 990. We see Net Assets/Balances in the negative; –$1,389,095 for 2016. [2016 MRF 990_2.pdf]

They do go on to explain a change to their fiscal year as well. [financials-annual-reports]

That explains the partial year return for 2015, (April 1, 2015 to Mar 31, 2016) which shows a Net Asset/Balance of -$928,072. [MRF March 2016 990 Public Copy.pdf]

We see Net Assets in the negative for the past two tax returns. I don’t actually understand how a business that does not have goods but only services, is able to operate in the red, nor how a Board of Directors could approve expenses which would leave a non-profit in the red. But hopefully the return for 2017 will be in the positive! But it certainly is disturbing to know that over a million dollars in donations by Melanoma patients, their family and friends, are not going to research or to fulfill any of the MRF Mission, but to dig the charity out of a very deep hole!

So the Comment posted earlier this week mirrors the concerns of many I suspect! I do not agree with the anonymous commenters’ opinion that “Shame on MRF and those who support them!” – those who support them have no reason for shame in this situation!  But MRF does owe the public an explanation for how they are going to proceed with their promise to create, fund and manage the Ocular Melanoma Patient Registry (as well as their other commitments to their donors).

Here are some of my remaining questions about the CURE OM Patient Registry, which I sent in an email reply to the management of MRF a couple weeks ago

  • How much of the original 100K in funding is left?
    (this amount was confirmed earlier in an  email from ljohnston@melanoma.org)
  • How much additional funding earmarked for the Patient Registry has been procured?
  • When will the Patient Registry actually be launched?
  • What plans are in place for multi-year funding and what is the amount needed?

OM Patient Registry?

I recently wrote to someone in a private message: I come from an art background and critique is how you learn; questioning leads to answers and solutions. It’s not the same as criticizing just for the sake of pointing out flaws and it is NOT an attack.

It is with that same spirit I post the following critique of the MRF/CURE OM handling of updates regarding the Patient Registry they are coordinating for the benefit of the Ocular Melanoma community as well as ask qustions which I feel are important for the organization to address.

I only started to engage again online in the Ocular Melanoma community in November when I was diagnosed with metastasized ocular melanoma. The first thing I looked into was the OM Patient Registry. There was nothing! I know the idea was discussed back in 2012 when I was first diagnosed.

I learned a few things, none of which were comforting to me at all! First to clarify, CURE OM is an initiative of the Melanoma Research Foundation [MRF]. It is not an actual non-profit organization on it’s own. It cannot fund raise or accept donations independently of MRF.

MRF through the CURE OM initiative had formally taken on the Patient Registry as a project in 2016. In fact, in either late 2016 or early 2017, they announced they had the funding and the Registry would be launched in 2017.

Basically, every time I have asked “what happened” I get personally attacked, threatened with being blocked from certain Facebook Pages, and my motivations questioned. To say the least, that is not a professional way to address the public’s’ concern! To be honest, I am not really sure what some of these people’s positions are with the organization, but they certainly present themselves as “representing” the nonprofit!

Some history from the MRF Website: dated October 19, 2016 In Chrisi’s Words:

“Perhaps the most exciting announcement of the weekend, from my perspective, was the announcement that the 2016 #CUREOM Unite! campaign would be committed to funding the creation of a national registry of OM patients.”

So where do things stand since this exciting announcement?

“The patient community has been closely involved in each step since– from an enthusiastic fundraising campaign to launch the program to guiding each successive action through a Patient Registry Steering Committee made up of OM patients, caregivers, healthcare professionals, researchers and MRF staff.”

“The Registry Working Group agreed to offer regular updates following their meetings so that the OM community will know the progress of the registry and the decisions being made.”

[ref 6/2/17 https://www.melanoma.org/about-us/news-press-room/blog/update-cure-om-patient-registry]

Maybe I am just impatient but, an update once a year is not what I consider “regular updates”!

So, what have the updates been since this June 2, 2017 Update?

I searched the website: https://www.melanoma.org/research-center/scientific-milestones

No updates on the Registry for 2017 or 2018 [the “CURE OM Patient Registry” link predates the June 2 article]

This indicates that between June 2, 2017 and the May 2018 Slide presentation – unless I the search function on their website does not work, there have not been the promised regular updates.

[May 2018 https://www.slideshare.net/MelanomaResearchFoundation/cure-om-patient-registry-update/1]

In reviewing the slides, the things that are “done” I am pretty sure we were told were done back in late 2016/early 2017 when the MRF/CURE OM announced the Registry Launch for 2017. But, according to the slides, they have not even selected a “registry platform provider”! There are no updates on how much of the funding was spent or on what, how much money is left which is allocated toward the next steps of actually launching the Registry, nor is there a budget listed for how much more money is needed nor any outlines for how they plan to obtain sustainable funding.

That leaves the questions I still have:

  • Why are the MRF audited financials and 990s for 2016 and 2017 not on the website?¹
  • How much of the original 100K in funding is left?²
  • How much additional funding earmarked for the Patient Registry has been procured?
  • When will the Patient Registry actually be launched?

In reviewing the steps left to complete, I am surprised that the Launch was announced for 2017, but critical “beginning” steps are still left to start [i.e. contracting with the chosen registry service provider and building the technical components of the registry]

I am also really concerned that “we don’t have the money” is already being floated as an excuse for not launching as fast as possible. [i.e. “Next steps include securing multi-year registry funding” ] It just seems to me that before an organization as experienced as MRF takes on a project this complicated, then elects to reject a contribution of $40,000 from cooperating nonprofit organizations [i.e. OMF and ACIS] they would have a budget in place which includes and addresses solutions in advance, for multi-year funding.

  • Exactly why did MRF/CURE OM reject the $40,000 offered by OMF and ACIS?
  • What plans are in place for multi-year funding and what is the amount needed?

I am allowing comments to this Post and encourage respectful discussion about this important topic!

[1] Kyleigh M. LiPira, MBA, CEO Melanoma Research Foundation emailed me saying “…all financial information is contained in the most recent Form 990 and other publicly listed documentation of the MRF” and a link which showed the financials 2015. [ref https://www.melanoma.org/about-us/financials-annual-reports]
[2] “The MRF secured 100k in funding for a Patient Registry” from private email from ljohnston@melanoma.org posted publicly in the Ocular Melanoma Support Facebook Group by a Group Member.