People with ALS, caregivers and people at risk of an ALS diagnosis have the opportunity to help the National Institute of Neurological Disorders and Stroke (NINDS) review applications for funding to support research into expanded access.
NINDS announced the new funding opportunity, Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access, in May. Participants who are selected for the panel will meet via teleconference in August.
NINDS has laid out the following qualifications for successful applicants:
- Experience with ALS, e.g., as a person with living with ALS, person at risk for developing ALS (e.g., a premanifest mutation carrier), person with a family history of ALS, and/or a family member or a caregiver of a person with ALS
- Appreciation of the need for clinical trials and protection of research participants in clinical research
- Ability to maintain confidentiality and protect the integrity of the peer review process
- Ability to follow instructions and be fair and objective in your evaluations
- Availability and ability to participate in a day long review meeting via videoconference
- Reasonable command over English
- Ability to clearly and succinctly articulate your views through oral and written communications
- Reasonable level of comfort with email and in navigating the internet (downloading and uploading files, filling forms etc.)
- Comfort in expressing individual opinion(s) on a panel of clinician scientists and other subject matter experts
- Ability to be open-minded regarding disparate opinions (consensus while desirable, is not always possible on review panels)
- Willingness to have their name publicly posted on the Scientific Review Group Roster.
Interested individuals should complete this form and send an email providing a resume for their self-nomination to [email protected] by 5:30pm EDT on June 20th, 2022. In addition to confirmation of eligibility and minimal contact information, applications include:
- Resume (in Microsoft Word format) *emailed to [email protected]
- Contact information (full name, telephone, and email address)
- Reason for interest in public reviewer position
- Brief description of any relevant experience; for example, experience with the disease, experience seeking out or participating in clinical research, or experience interacting with the broader ALS community
- Please note, involvement in a clinical trial that is testing a therapy proposed in an application to this FOA will constitute a conflict of interest for this review.