Accelerated Cure Project Repository
Art Mellor, President & CEO
Accelerated Cure Project for Multiple Sclerosis

We are creating a new model of research around a large-scale shared resource (a sample and data repository) that will allow the amplification of research results through passive collaboration without requiring researchers to change how they work.  We can effectively multiply the value of research results through an independent network of sharing.

Accelerated Cure Project for Multiple Sclerosis is dedicated to curing MS by determining the causes. We are expanding our repository to include other demyelinating diseases such as transverse myelitis (TM), neuromyelitis optica (NMO), acute disseminated encephalomyelitis (ADEM), and optic neuritis (ON). We believe that each of these five diseases can shed light on the others.

We believe that knowing the causes will lead to the fastest route for a cure. Knowing the causes will:

• Provide targets for treatments, cures, and prevention
• Allow remyelination strategies to work by removing the cause of demyelination
• Identify markers to speed up and refine drug trials
• Provide definitive diagnosis and segmentation for treatment
• Enable the creation of better animal models

These diseases share two characteristics with many diseases we don’t know the causes of:

1. They are most likely a family of diseases, not a single disease. This means that a study done on 100 people  “with MS,” for example, might actually include 5 different disorders and thus insufficient power to identify a cause. What causes MS in one person may be different than what causes MS in someone else. 

We need to study very large numbers of people to have sufficiently sized sub-populations of people with the same root causes in order to determine what they are.

2. They appear to be multifactorial – they are not caused by a single gene, a single virus, a single nutritional deficiency, etc. They appear to be caused by a set of genes that confer susceptibility and an environmental trigger. In order to identify these root causes requires researchers from different disciplines looking at the same people so that their results can be put together.

In order to address these characteristics, a very large population of people with each disease and matched controls (people similar to those with the disease, but who do not have the disease) needs to be studied over time by researchers in different fields.

By studying the same people, the results from two different research areas can be put together.  By studying a large group of people we can find meaningful sub-populations who share a common genetic background and trigger. By studying over time we can see what changes occur that might be clues to what is causing these diseases.

Our Repository is that population. We will collect samples (initially blood, later spinal fluid and post-mortem brain tissue), and clinical and epidemiological data from a large group (initially 1000) of people with one of the five diseases and matched controls.

We will make these samples available to researchers investigating the causes of these diseases in exchange for the return of any per-sample data generated using these samples (allowing time to secure their intellectual property rights). This additional data will be made available to other researchers using the collected samples and data. Access to samples will be regulated by a scientific advisory board who will review applications for use.

Researchers are extremely eager to have access to a resource like this, but are unable to create it themselves for three main reasons:

• It is expensive. At $2.5M to collect the first 1000 samples, the cost is out of the range of most research grants, which are typically in the $50K - $250K range.
• It is administratively difficult. Collecting 1000 samples in a reasonable time will require 5-10 sites around the country participating. Several full-time staff are required just to manage this project. Researchers do not have this kind of support.
• It is not publishable. While the use of a resource like this will produce many published papers, the creation is a time and effort intensive project that is not publishable itself. Researchers need to publish to advance their careers and get grants.

As a nonprofit we are not stopped by any of these reasons. We can raise the money, do the administrative work, and not worry about publication.

By creating a large, shared resource that requires data sharing in return, we can revolutionize research on these diseases without requiring a significant change in the way research is currently conducted. This model creates a variety of leverage situations that amplify any individual research that is done using the repository:

• Researchers at sites participating in the collection of samples will get priority access to the repository. By collecting samples from 100-200 subjects themselves, they will get access to samples from 1000 subjects.  This will allow experiments to be conducted at a scale not possible otherwise.

• Because all researchers use samples from the same people, their results can be combined and cross-correlated to produce results that could not otherwise be obtained from stand-alone experiments.  This will allow collaboration to occur without having to get researchers to collaborate officially. We get more information out of the system than was put in directly. Direct collaboration is enhanced, also.

• Researchers who get access have a powerful tool when applying for grants. By getting access to such an expensive resource, other funding agencies need only fund the additional work of analysis, leveraging their money tremendously.  This will enhance the appeal of grants to other agencies and increase the likelihood of getting funded. 

• Donors contributing to the repository are funding many, many experiments at once and not only a single effort.  This allows people to get more bang for the buck by funding a shared resource.

• By collecting from subjects with other demyelinating diseases (such as TM, ADEM, NMO, and ON), each disease can use the others as a control while studying their own.  We can leverage the efforts of creation of this resource across multiple diseases, benefiting all of them simultaneously.

In summary, by creating a shared resource that requires participants to share their results, we can create more experiments, larger experiments, more collaboration within and across institutions and diseases, enhance funding, and ultimately determine the causes of MS and other related disorders.

Other Facts:

• Johns Hopkins has agreed to be the lead site for this collection, with Dr. Ben Greenberg as the lead researcher.

• We have completed an IRB approved pilot study at UMass Memorial and Beth Israel Deaconess, collecting samples from ~50 subjects and distributing them to researchers at the Oklahoma Medical Research Foundation to look at EBV as a trigger for MS.

• While we are starting out collecting blood, we intend to add CSF and post-mortem brain tissue as funding allows.

• This study is longitudinal, allowing us to track trends within individuals with MS. Because we will also be recruiting unaffected first-degree relatives, we will also have the opportunity to watch some of them convert to having MS.

We will be working with the following vendors to conduct the study:

• Clinical Research Organization: Omnicare, Inc.
• Electronic Data Capture: DSG, Inc.
• Sample Storage: Seracare, Inc. (Genomics Collaborative Subsidiary)

Sites we are talking to regarding collection:

• Beth Israel Deaconess Medical Center, Boston, MA
• UMass Memorial, Worcester, MA
• Johns Hopkins, Baltimore, MD
• UT Southwestern, Dallas, TX
• Shepherd Center, Atlanta, GA
• Saud Sadiq's Center (changing affiliation), New York, NY

For further information contact:

Art Mellor, President & CEO
art[AT SIGN]acceleratedcure.org
(781)487-0008