The ALS Association
ALS Ice Bucket Challenge Progress

Research Policies

The ALS Association Mission

To discover treatments and a cure for ALS, and to serve, advocate for, and empower people affected by ALS live their lives to the fullest.

The ALS Association Global Research Program Mission

Discover new life-extending treatment:

  • Drive worldwide research agenda with urgency and boldness to improve outcomes for people with ALS
  • Collaborate with partners in a comprehensive and diverse research model
  • Facilitate the rapid development of new treatment options to extend and enhance quality of life while seeking a cure

Policies, Procedures, Intellectual Property Policy

This website provides an overview of research policies. Awardees will sign a specific contract as a condition of award that will detail all their obligations and those of the Association.

Contacting ALS Association about Research

In all instances contact ALS Association Research at researchgrants@alsa-national.org

Use of Animals in Biomedical Research Statement

  • Animals shall be used in biomedical research only when no other means of obtaining scientifically sound, valid and useful results are available.
  • The minimum number of appropriate animals required to obtain and validate results shall be used.
  • The acquisition, care and use of animals must be in accordance with all applicable federal, state and local laws and regulations.
  • Certifications must be received from research facilities prior to being approved for a research grant that the facility(ies), its researchers, and employees adhere to the Animal Welfare Act, National Research Council Guide for the Care and Use of Laboratory Animals, and any appropriate U.S. Department of Agriculture or National Institutes of Health regulations and standards.
  • In cases requiring the death of an animal, only the most appropriate and humane form of euthanasia shall be used consistent with the purpose of the research.

Human studies

If Grantee is conducting Clinical Research, Grantee shall comply with applicable federal, state, and local laws, regulations, guidance, standards, policies and requirements relating to the conduct clinical Research, such as but not limited to Health Insurance Portability and Accountability Act (HIPAA) of the USA, the Common Rule, the E.U. Data Protection Directive (Directive 95/46/EC), the U.S. Food, Drug and Cosmetic Act and its implementing regulations and guidance, standards, policies, and requirements issued by the FDA, and applicable industry standards and guidelines.

Grantee shall conduct the Research described in the Research Plan under the oversight of and consistent with any requirements or directives imposed by the overseeing IRB(s), consistent with all applicable protocols as approved by such IRB(s), and obtain all informed consents, authorizations, and other permissions required under Applicable Law and as approved by the overseeing IRB(s). Grantee shall ensure that all informed consents, authorizations, and other permissions obtained from Subjects will allow all uses and disclosures of individually identifiable information as required under this Agreement and the Research Plan. Grantee shall provide documentation of IRB approval of the Research under the Research Plan and of any investigational new drug (“IND”) application required to conduct Research under the Research Plan upon request by the Association.

The ALS Association supports the concept of voluntary accreditation with the Association for The Accreditation of Human Research Protection [AAHRPP]. Please consult your research institute and answer the following questions clearly if applicable to your project.

Intellectual property arising from awards

Grantee shall have the first right, but not the obligation, to prepare, file, prosecute and maintain all registerable rights in Intellectual Property arising from implementation of the Research Plan at its sole expense. It shall notify the Association if it does not intend to pursue Patent protection for any invention, discovery or idea arising from the implementation of the Research Plan and assign all rights to the Association. The Association also expects a royalty from discoveries in proportion to its contributions to the direct activity leading to the discovery.

Research products

Grantee shall exercise diligence to disseminate results as soon as practicable. Grantee shall acknowledge The ALS Association in any and all publications and public presentations relating to the Research conducted under the Research Plan.

The Association encourages all research products to be as open as possible. Specifically:

  • Ensure publications to available to the reader without charge.
  • Use preprints and pre-regeistering protocols when possible to speed disemination.
  • Ensure other research products are available to the user without charge and with as few usage restrictions as possible.

Principal Scientist

The Principal Scientist is the one who is personally and actively responsible for the conduct of the research. The Principal Scientist may not request salary support for him/herself.

Senior Postdoctoral Fellow as Principal Scientist

Applications for the Starter Grant Program from senior postdoctoral fellows with sufficient scientific independence to direct research supported by a grant are invited. Applications from junior postdoctoral fellows for multi-year or starter awards are not invited. These applications can only be submitted in The Milton Safenowitz Postdoctoral Fellowship for ALS Research.

Graduate Students and Predoctoral Fellows

Graduate students are not eligible to apply for any of the awards as a Principal Scientist. The dissertation research of a graduate student will not ordinarily be supported through a salary stipend. Salary support for graduate students heavily involved in the project and/or with exceptional expertise in the procedures will sometimes be provided. In such cases, the grant proposal should include extensive information relating to the student's educational background. Assurances must be made that the requested stipend is in line with that received by predoctoral fellows at the institution. Under no circumstances will tuition costs be paid as part of the grant.

Transfer of a Grant

A grant may not be transferred without prior written approval from The ALS Association. Under no circumstances can a postdoctoral fellowship be transferred.

To request a transfer, provide a written explanation of the reasons and circumstances of the transfer together with a full and detailed report on the research and a detailed itemized report of all funds expended prior to the request. Both of these reports must be approved by the grantee and the Principal Scientist.

No Cost Extension of the Term of the Grant

An extension of the term of the grant without additional funds may be approved when requested and justified. The request for a no cost extension must include a full and detailed report on the research and a detailed itemized report of all funds expended prior to the request. Award funds should not be budgeted for reserves or contingencies.

Progress Reports

All projects, unless specifically notified in the Award Letter, are subject to detailed reports on research every six months. Failure to provide a requested research report will result in a stop on payment of the grant and a written warning that the grant will be considered for early termination without further payments if the requested report is not received within two more weeks. At thirty days overdue a written early termination notice will be sent to the Principal Scientist and the grantee and a further two weeks will be given to provide the requested report. At 45 days overdue the grant will be terminated and no further payments will be made except with the discretion of The ALS Association even if reports are brought up to date. All research reports are considered privileged communications and their distribution is limited to the reviewing consultants and staff of The ALS Association.

Grant Payments

The ALS Association’s financial officer makes grant payments to the Principal Investigator’s institution for disbursement. Payments are made on a specified schedule and are contingent upon the receipt by ALS Association of satisfactory progress reports and documentation of research funds expended as requested in the award letter. Grant payments are made in US dollars only. The Principal Scientist must designate the institution (grantee) as the official recipient of the grant made for the support of research of the Principal Scientist.

Unexpended Funds

Unexpended funds must be reimbursed to The ALS Association in the form of a U.S. Dollar check, together with a detailed itemized report of all funds expended within thirty days of the end date of the award.

Over-Expenditures

The ALS Association is not responsible for over-expenditures of grants, and the Association requires a refund of all non-allowable expenditures before payments will be made on continuation or supplemental grants.

Re-budgeting of Funds

Transfers into personnel and consumable supplies categories may be made at the discretion of the Principal Scientist with knowledge of his/her Institution. Transfer of funds into equipment, travel, other expenses not specifically identified in the budget, or indirect expenses, may not be made without prior written approval of The ALS Association.

Unobligated Funds

Funds remaining unobligated at the end of a grant period may not be carried over to the succeeding period to create an increase in funds for the succeeding period. Rather, unobligated funds will be applied against the succeeding grant payment. Where the grant in force has been terminated, all unobligated funds must be returned to The ALS Association within thirty days of the termination of the grant.

Accounting Procedures and Forms

Accounting of all expenditures made under each grant must be made to The ALS Association within thirty days of the termination of the grant.

Non-Allowable Expenditures

  • The ALS Association ordinarily will not fund the purchase of permanent equipment
  • The cost of installing and maintaining equipment is not allowed unless such funds were requested and approved as part of the grant
  • Non economy travel and incidental expenses are not permitted and the maximum travel allowable is $2,000 per year.
  • Duplication of funding is not allowed
  • No premiums are allowed for insurance of equipment and supplies
  • Dues to organizations such as federations or societies: purchasing of books, journals or office equipment; and registration fees for scientific meetings are not allowable expenses. No funds shall be budgeted as "Contingency funds"
  • Any recurring annual increase is limited to 5% - applied only to personnel and consumable supplies
  • The ALS Association is not responsible for over-expenditures of grants, and The Association requires a refund of all non-allowable expenditures before payments will be made on continuation or supplemental grant

Indirect Costs/Overheads

Limited to no more than 10% of the total award.

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