Clinical trials for Alzheimer’s and other neurodegenerative diseases are expensive and slow, in part because they cannot find enough participants. Of the 5 million people with Alzheimer’s in the United States alone, many never learn about trial opportunities, and for rare dementias the pool of potential volunteers is small to begin with. Online registries that allow people to be contacted about trial opportunities in their area have sprung up to speed recruitment. Some registries educate members about the disease; others establish active patient communities (May 2011 news; Nov 2013 news). Most sites ask for minimal information at sign-up, usually name, email address, birth year, and zip code. After registering, people may choose to complete more detailed health questionnaires in order to be matched to trials.

Most registries include people with or without a diagnosis. In Alzheimer’s, researchers are beginning to test treatments in people at pre-dementia stages. These participants are hard to find, because most do not know they are developing AD. Several registries invite enrollment by cognitively healthy people who are concerned about their dementia risk. Registrants receive information about ongoing research, and can choose to take online cognitive tests to track their brain health. The shared goal of these registries is to build a large pool of potential participants for therapeutic prevention trials. Scroll down for a listing. If your registry is not listed, please contact registries@alzforum.org.

	Alzheimer’s Association TrialMatch Launched in 2010, this clinical study-matching service aims to help people in the United States find an Alzheimer’s trial they can join. Anyone over 18 can sign up. Registrants complete a health questionnaire online or over the phone, and then receive emails alerting them to studies for which they may qualify. User data is never shared with study sites. The Alzheimer’s Association contracted with the company EmergingMed for this resource.
	Alzheimer’s Prevention Registry Anyone over 18 from anywhere in the world can enroll. Registrants receive emails about Alzheimer’s prevention research, can browse open studies in their region, and may choose to be contacted with offers to participate in particular studies. Launched in May 2012, 210,000 people had enrolled as of January 2016. Most participants are 45 or older and have no cognitive diagnosis, but many have a family history of dementia. Several presymptomatic intervention trials use this resource to reach potential participants. The nonprofit Banner Alzheimer’s Institute in Phoenix maintains the registry in partnership with academic, advocacy, and philanthropic organizations.
	Brain Health Registry People over 18 from around the world can enroll in this registry, which launched in 2014 and had 30,000 members as of January 2016. Registrants fill out health and lifestyle questionnaires and take cognitive tests online, which they can repeat every three to six months. This registry partners with the cognitive-assessment company CogState and the brain-gaming program Lumosity by Lumos Labs, Inc. Participants whose questionnaire and testing data indicate they may be candidates for research are notified and invited to participate in studies and clinical trials. The Brain Health Registry is maintained by the University of California, San Francisco, and supported by grants from philanthropic and industry organizations.
	DIAN Expanded Registry This is an international registry for drug trials in autosomal-dominant Alzheimer's disease (ADAD), a rare form of Alzheimer’s caused by mutations in the genes APP, PS1, or PS2. ADAD affects families across multiple generations and begins in a person’s 30s, 40s, or 50s. The DIAN EXR started in 2012. People 18 or older who have a family history of early onset Alzheimer’s are invited to register. They are contacted by staff at the Dominantly Inherited Alzheimer Network (DIAN), based at Washington University School of Medicine in St. Louis, who help determine if their family history is due to ADAD. If it is not, potential volunteers are referred to other registries. If it is, they are eligible to screen for the DIAN observational study or therapeutic intervention trials run by the DIAN Trials Unit. Washington University runs this site with support from a consortium of philanthropic organizations and pharmaceutical companies.
	Fox Trial Finder This service recruits participants for clinical studies of Parkinson’s disease in the United States and Europe. People with Parkinson’s and control volunteers can register and receive emails suggesting study matches. Visitors also can browse recruiting studies. The site lists studies from around the world. The Michael J. Fox Foundation established this registry in 2012, and it had 52,000 registered potential volunteers in Jan 2016.
	The Global Dystonia Registry This registry recruits for clinical trials on dystonia, a movement disorder characterized by involuntary muscle contractions. People with dystonia and their relatives may enroll. In addition to trial matching, the site also collects data from registrants for scientific studies. Working with dystonia researchers, dystonia patient organizations manage all functions of the registry, which started in 2011.
	Huntington’s Disease Society of America HD TrialFinder Launched in 2015, this resource matches people with Huntington’s disease and healthy controls in the United States and Canada to clinical trials. People complete a questionnaire and then receive notifications about trials in their area for which they qualify. The Huntington’s Disease Society of America contracted with the company EmergingMed to create this service.
	National ALS Registry This registry collects data on people living in the United States who have amyotrophic lateral sclerosis. The data are used to estimate the incidence and prevalence of ALS, and understand what the risk factors are for this disease. This registry does not directly match people to trials; instead, researchers can submit a request to the Centers for Disease Control and Prevention to notify registry members who would be eligible for their research study or trial. The federal Agency for Toxic Substances and Disease Registry (ATSDR) in Atlanta launched this site in 2009 under a mandate from Congress. The online portal went live in 2010 (see Oct 2010 news).
	PatientsLikeMe This patient network allows people to track their health over time, share information with others who have the same condition, and contribute data to research. People with any medical condition can join. Parkinson’s and ALS are represented by thousands of patients each, and rare neurologic diseases such as progressive supranuclear palsy (PSP) or multiple system atrophy (MSA) with hundreds each. This company works with pharmaceutical companies to incorporate patient input into research, and studies patient experience on subjects including clinical trials and use of new technologies. It also draws on open data to match patients with clinical trials. Brothers Jamie and Ben Heywood of Newton, Massachusetts, and family friend Jeff Cole founded this company in 2004 (see Jun 2010 news).
	Rare Diseases Clinical Research Network/ Frontotemporal Dementia Called RDCRN for short, this service educates users about rare diseases and recruits for trials. The site covers more than 200 diseases, including frontotemporal lobar degeneration (FTLD). The consortium Advancing Research and Treatment for Frontotemporal Lobar Degeneration (ARTFL), which facilitates clinical trials for this condition, runs a trials registry through the RDCRN site (see also Nov 2014 news). Patients worldwide can register. The National Institutes of Health Office of Rare Diseases Research established the RDCRN Contact Registry in 2003; it is now maintained by the National Center for Advancing Translational Sciences (NCATS).