Sign up to be prescreened!

Your neurologist will assign a term to describe the level of certainty they have regarding your diagnosis. This is determined basis on the items that they can measure clinically, such as lab tests, imaging, etc. Often times people go from one "stage" below the next as their disease progresses. For the purposes of this collection effort we are seeking people which have a possible, probable or definitive diagnosis of ALS. Please indicate in the box above which "stage" you fall into. If you do not know, you can confirm such from your neurologist or select the one that best fits you. This information will be confirmed from your medical records in the next step of the prescreening process.

Definite ALS - is defined on clinical grounds alone by the presence of UMN as well as LMN signs in the bulbar region and at least two of the other spinal regions or the presence of UMN and LMN signs in three spinal regions. The important determinants of diagnosis of definite ALS in the absence of electrophysiological, neuroimaging and laboratory examinations are the presence of UMN and LMN signs together in multiple regions.

Probable ALS - is defined on clinical grounds alone by UMN and LMN signs in at least two regions. While the regions may be different, some UMN signs must be rostral (above) the LMN signs. Multiple different combinations of UMN and LMN signs may be present in patients with probable ALS.

Possible ALS - is defined on clinical grounds alone when the UMN and LMN signs are in only one region or UMN signs alone are present in 2 or more regions or LMN signs are rostral to UMN signs (the latter distribution of signs needs to be differentiated from multiple non-ALS processes). Monomelic ALS, progressive bulbar palsy without spinal UMN and/or LMN signs and progressive primary lateral sclerosis without spinal LMN signs and progressive primary lateral sclerosis without spinal LMN signs constitute special cases which may develop LMN or UMN signs to meet the criteria for probable ALS with time or be subsequently confirmed at autopsy by specific LMN and UMN neuropathologic findings.

Suspected ALS - will manifest only LMN signs in 2 or more regions, although UMN pathology might be demonstrated at autopsy. However, only clinical signs are considered pertinent to this classification at the time of diagnostic evaluation.

In order to participate in this program, you will need to be able to travel to Boston as this is where we will conduct the actual collection of samples. It is also important to travel here as we will provide a 3-4 hour seminar to you and your family on the goals of the precision medicine program at ALS TDI so that you can understand what we will be doing with all of the samples you will be generously donating. In this seminar you will also be shown how to enter information into the online portal and meet with our study coordinators whom you will be interacting with throughout the study. Most importantly, you will be able to ask questions about what to expect next. It is crucial to ALS TDI that you have a clear understanding of this program and the important role that you play in its development and success.

However, ALS TDI is not in the position to financially compensate you for this travel expense, however, we will be happy to work with you to help arrange your travel to the Boston area (provide information about getting to/from sites, hotel and transportation information etc). We suggest that you plan on travelling to Boston for about 1.5 days. Upon completing this prescreen form you will receive a phone call from one of our principal investigators which will be able to answer additional questions about what you can expect on your trip to Boston to participate in this study.