Information about rare neurodegenerative disorders

Clinical Trial: NCT03076671

August 10th, 2017 | Posted by cbgd6278 in medical trials - (Comments Off on Clinical Trial: NCT03076671)

Clinical Trial NCT03076671 is seeking volunteers

Clinical Trial Summary

This is a two-center (University of Colorado, University of California San Francisco) community-based comparative effectiveness study of outpatient palliative care for Parkinson’s disease (PD) and related disorders (progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple systems atrophy (MSA), Lewy Body Dementia (LBD). It will utilize a randomized stepped-wedge design to compare patient and caregiver outcomes between usual care in the community versus usual care augmented by palliative training and telemedicine support to provide other resources (e.g. social work)


For more information :

Clinical trials

March 2nd, 2015 | Posted by cbgd6278 in medical trials | research | studies | Trials - (Comments Off on Clinical trials)

University of California, San Francisco  is sponsoring a study to determine the safety and tolerability of TPI 287. They are currently seeking applicants.  For more info:

Safety Study of TPI-287 to Treat CBS and PSP (TPI-287-4RT)

Clinical Trials

January 20th, 2014 | Posted by cbgd6278 in medical trials | research - (Comments Off on Clinical Trials)

Other  organizations to contact about clinical trials  below. Although, I have posted information about clinical trials and  or support, I think it gets lost on this site.

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
Danbury, CT   06810 External link
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
CUREPSP (Foundation for PSP|CBD and Related Brain Diseases)
30 E. Padonia Road, Ste. 201
Timonium, MD   21093 External link
Tel: 410-785-7004 800-457-4777
Fax: 410-785-7009
Association for Frontotemporal Degeneration (AFTD)
Radnor Station Building #2 Suite 320
290 King of Prussia Road
Radnor, PA   19087 External link
Tel: 267-514-7221 866-507-7222

I stumbled across a medical research looking for volunteers to test alternative  treatments for CBGD and PSP. Since therapies used for Parkinsons have little or no impact on CBGD and PSP, the focus here is to find something that will alleviate  symptoms.

For more information:

Noninvasive Cortical Stimulation (rTMS) for Motor and Non-Motor Features of Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD