Research Registries
Join registries for updates and research
Review status: Waiting for team review. An AI editorial check was completed on 2026-08-14 by claude-opus-5. It checks clarity, attribution and scope against the sources, and it is not a Compass team or clinical sign-off. Waiting for clinical review. Last updated 2026-08-14.
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- Understand what registries doRegistries support research and can sometimes surface opportunities.Why it matters: Knowing what a registry is for helps you judge whether joining is worth it for you.
- Check what information is neededReview the consent, the data collected, and any follow-up expected.Why it matters: Knowing the commitment up front prevents joining something you cannot sustain.
- Decide which registries are worth joiningSome will be more relevant to your situation than others.Why it matters: A registry you engage with is worth more than several you signed up to once.
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A research registry is a database that collects information from people with ALS/MND who agree to take part, to help research. Joining one is a way to contribute to research without necessarily taking part in a trial. Some registries also help connect you to trials.
Why people join:
- Helping research. The information people contribute helps researchers understand how ALS/MND varies, how it progresses, and how to find and test treatments. It is a meaningful way to contribute, often with little effort.
- Hearing about trials. Some registries notify you about clinical trials you might be eligible for, saving you searching and helping you not miss opportunities (see the clinical trials card).
- Staying informed. Registries and the organisations running them often share research updates and news.
- Low burden. Many registries mainly involve sharing information (sometimes updated over time), rather than visits or treatments. This can be an easy way to take part in research.
Important things to know:
- It is voluntary, and your choice. You decide whether to join, what to share, and you can usually withdraw at any time.
- Joining a registry is not the same as joining a trial. A registry collects information and may inform you of trials. It does not enrol you in one. You would always decide separately about any trial.
- Your privacy should be protected by rules about how your data is stored and used (covered in a later question). It is worth asking about this before you join.
Registries are one of the simpler, lower-commitment ways to support ALS/MND research, and they can also keep you connected to opportunities and news. The next questions cover the kinds of registries, what joining involves for your data, and how to find one.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 3. Information contributed to registries helps researchers understand how ALS/MND varies and how it progresses, and helps in finding and testing treatments.
Supports this. ALS Observational Studies — Your ALS Guide · Practical guide
Treats registry studies as one kind of observational study and says what the whole group of them is for: learning about the causes, the different types and the progression of ALS. It goes on to say that this understanding helps identify biomarkers and improve clinical trials, which is the finding-and-testing half of the sentence.
“Observational studies help researchers learn more about ALS, including potential causes, its different types, and how it progresses.”
Why are observational studies so important?Link checked August 2026
Adds context. Joining the National ALS Registry — Centers for Disease Control and Prevention · Official clinical information · August 2026
One real registry describing what is done with the information it holds: looking for changes in disease patterns over time and for risk factors people with ALS have in common. This is a single national registry in the United States rather than a statement about registries generally.
“Researchers can use Registry data to look for disease pattern changes over time.”
Joining the RegistryLink checked August 2026
Statement 2 of 3. Some registries will tell you about clinical trials you might be eligible for.
Supports this. Joining the National ALS Registry — Centers for Disease Control and Prevention · Official clinical information · August 2026
Lists receiving emails about clinical trials and epidemiological studies among the things people who join can choose. The Compass sentence says only that some registries do this, and this is a registry that does. No quote: the source states it as a list item rather than as a complete sentence.
Link checked August 2026
Statement 3 of 3. Many registries ask mainly for information, sometimes updated over time, rather than for visits or treatments.
Qualifies this. ALS Observational Studies — Your ALS Guide · Practical guide
Its description of registry studies is survey-based, which fits. But the same page says studies of this kind vary a lot in what they ask, and its list of what participation can involve includes travelling for in-person assessments and giving blood, saliva or urine. So the low-burden picture holds for many but not for all.
“Some require in-person visits, some can be done completely from home, and others are hybrid.”
Will I need to travel?Link checked August 2026
Adds context. Joining the National ALS Registry — Centers for Disease Control and Prevention · Official clinical information · August 2026
A worked example of the low-burden kind: joining this national registry needs only a computer, an internet connection and an email address, and the taking part is online surveys. It is one registry in one country, and it separately offers optional donation of blood, saliva and urine.
“All that you need is a computer, an internet connection, and an email address.”
Learn more about signing up.Link checked August 2026
Used across the whole answer
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"Registry" covers a few different things, and they can overlap. Knowing the broad kinds helps you understand what you might be joining. The specific registries available depend on where you live.
- Patient / condition registries. Collect information such as symptoms, progression, and treatments from people with ALS/MND. This helps researchers understand the condition across many people. These usually mainly involve sharing information over time.
- Trial-matching registries. Focus on connecting people with clinical trials they may be eligible for. You provide some details, and they notify you of relevant trials (linking closely with the clinical trials card).
- Biobanks and sample-based registries. Involve donating biological samples (such as blood) alongside information, to support laboratory research. This includes research into biomarkers (see the biomarker monitoring card). These may involve giving samples at visits.
- Genetic registries / studies. Focus on the genetics of ALS/MND, sometimes involving genetic testing or family information (the genetic testing card covers the personal and family implications of genetics).
- Disease and outcome registries run by health systems, associations, or research networks, sometimes national in scope.
A few points:
- They differ in what they ask of you. Some involve simply sharing information, some giving samples, and some more involved participation. It is worth understanding which kind you are considering.
- Some are run by associations, others by universities, hospitals, or research networks. Your ALS/MND team or association can point you to reputable ones.
- You can often join more than one, and choose what level of involvement suits you.
Which registries exist, and how they work, varies by country. The next question covers what joining involves and how your data is handled, and the one after covers finding one near you.
Explained: what this word meansEvidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 2. Registries differ in what they ask of you, from sharing information only, through giving samples, to more involved participation.
Supports this. ALS Observational Studies — Your ALS Guide · Practical guide
Answers the question of what taking part involves by saying it depends on the study, then lists the range: online questionnaires, submitting medical records, travelling for in-person assessments such as physical exams or breathing tests, giving periodic blood, saliva or urine samples, and recording your voice.
“This depends on the specific study.”
What will participation involve?Link checked August 2026
Statement 2 of 2. You can usually take part in more than one registry or study at the same time.
Supports this. ALS Observational Studies — Your ALS Guide · Practical guide
Says you should be able to take part in several observational studies at once, and that enrolling in more than one advances research further because different studies collect different information. It adds one caution: some large studies pool participant data in the same database, so it is worth asking the teams whether joining both would just duplicate data.
“You should be able to participate in multiple observational studies at the same time.”
Can I enroll in more than one observational study?Link checked August 2026
Used across the whole answer
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Joining a registry is usually straightforward, but because it involves sharing personal and health information, it is worth understanding what is involved and how your data is protected before you sign up.
What joining typically involves:
- Consent. You are given information about the registry and asked to agree (consent) to take part. Read this carefully. It explains what you are joining and what your data will be used for.
- Sharing information. You provide details about yourself and your ALS/MND, sometimes updated over time. Some registries also involve giving samples (like blood) or permission to access medical records.
- Ongoing or one-off. Some registries ask for occasional updates; others are more one-off. Check what is expected.
Key things to check and expect about your data and privacy:
- How your data is used. Reputable registries use your information for research purposes set out in the consent. Ask what it will and will not be used for.
- How it is protected. Your information should be stored securely and, for research, usually de-identified or coded so researchers cannot directly identify you. Ask how privacy is maintained.
- Who can access it. Ask which researchers or organisations see your data, and whether it may be shared, and on what terms.
- Your rights. You should be able to ask questions, see how your data is handled, and withdraw. Ask what withdrawing means for data already collected.
- Data-protection rules that apply depend on where you live; legitimate registries follow the relevant laws.
Reassurances and good practice:
- It is voluntary at every step. You choose what to share and can usually stop at any time.
- Take your time to read and understand the consent, and ask anything you are unsure about before agreeing.
- Stick with reputable registries. These are run by established associations, universities, hospitals, or research networks. Your ALS/MND team or association can recommend them.
If privacy is a concern for you, that is completely reasonable. Ask the registry directly how they protect your information, and only join if you are comfortable with the answers. The next question covers how to find and join a registry.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 3. Joining a registry involves an informed consent step: you are given information about it and asked to agree before you take part.
Supports this. ALS Observational Studies — Your ALS Guide · Practical guide
Says a signed informed consent form is required for every study of this kind, and that the form is where you are told how your data will be used and what the team will do to protect it. It also says the potential risks of taking part are listed in that same form.
“Every study requires you to sign an informed consent form that will contain information about how your data will be used and what the study team will do to protect it.”
Are there different types of observational studies?Link checked August 2026
Statement 2 of 3. Information passed to researchers is normally handled so that they cannot directly identify you.
Supports this. ALS Observational Studies — Your ALS Guide · Practical guide
States the same expectation, in terms of the outcome rather than the method: data shared with researchers should not reveal who you are. It does not use the words de-identified or coded, and it does not describe how this is done.
“Data collected in observational studies should be shared with ALS researchers in a way that doesn't reveal your personal or medical information.”
Are there different types of observational studies?Link checked August 2026
Adds context. Joining the National ALS Registry — Centers for Disease Control and Prevention · Official clinical information · August 2026
One registry saying plainly what it does: people who join are not identified by name, and the information can only be seen by scientists the registry has approved. This is a single national registry in the United States, not a general rule.
“Anyone who registers is not identified by name.”
Learn more about signing up.Link checked August 2026
Statement 3 of 3. You should be able to ask questions about a registry, find out how your data is handled, and withdraw.
Supports this. ALS Observational Studies — Your ALS Guide · Practical guide
Covers all three: it tells people to ask the study team how they handle personal data if they have questions or concerns, and it says taking part is voluntary and can be stopped at any time. It does not say what happens to data already collected, which is the question the Compass bullet goes on to advise asking.
“Participation in observational studies is voluntary, so if needed, you can withdraw at any time.”
Is participation right for me?Link checked August 2026
Used across the whole answer
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Finding a reputable registry is usually easy once you know where to ask, and your ALS/MND team and association are the best starting points.
Where to find one:
- Your ALS/MND team or neurologist. They may know the registries relevant to your area and be able to point you to reputable ones, or enrol you in studies they run. It is worth asking whether your own clinic is a study site.
- Your MND/ALS association. Many run or know national and international registries and can guide you to trustworthy options.
- Research networks and universities. Established ALS/MND research groups sometimes run registries you can join.
- Trial-finding services. Some also connect to registries or trial-matching programs.
Tips:
- Choose reputable registries. Stick to those run by established associations, universities, hospitals, or recognised research networks. Your team or association can confirm a registry is genuine.
- Decide what suits you. Consider how much involvement you want. That might be information only, samples, or more. Pick registries that match.
- You can join more than one, and you do not have to decide everything at once.
- Read the consent carefully before joining, and ask about data and privacy (see the previous question).
- Keep a note of what you have joined and your contacts there, so you can follow up or withdraw if you wish.
If you are interested in trials too, mention this. Some registries focus on matching you to trials, which connects with the clinical trials card.
Because the specific registries available depend on where you live, your ALS/MND team and local association can point you to the right, trustworthy ones. The next question offers prompts to ask.
Evidence for this answer
The sources the Compass team used to write this answer. Highlighted phrases in the answer above correspond to the statements below.
Statement 1 of 1. Your ALS/MND team or neurologist is a starting point for finding registries and studies, and may run studies you can join.
Adds context. NICE MND guideline — NICE · Clinical guideline
Lists opportunities for people with MND to be involved in research among the things the neurologist giving the diagnosis should have up to date knowledge and expertise in. That is a reason to ask them, but the guideline says nothing about registries specifically and nothing about what exists in a particular area.
Link checked August 2026
Adds context. ALS Observational Studies — Your ALS Guide · Practical guide
Tells people to begin with their own neurologist and ask whether their ALS clinic is a study site, and says that if it is, taking part may be built into normal clinic visits. That reaches the enrolling half of the sentence; it does not say that teams know which registries are available locally.
“Start by asking your neurologist if your ALS clinic is a study site.”
Where can I find observational studies?Link checked August 2026
Used across the whole answer
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A few questions for your ALS/MND team, association, or the registry itself help you choose and join with confidence. Pick what matters to you.
Purpose and reputation
- Who runs this registry, and is it reputable?
- What is the registry for, and how will my information help research?
- Could my team recommend a registry that would suit me?
What's involved
- What would I need to share or do, and how often?
- Does it involve giving samples, or access to my medical records?
- Will it also tell me about clinical trials I might be eligible for?
My data and privacy
- How will my information be stored and protected?
- Will it be de-identified, and who can access it?
- What exactly will my data be used for, and what won't it be used for?
- Could my data be shared with others, and on what terms?
My rights
- Is taking part voluntary, and can I withdraw at any time?
- What happens to my information if I withdraw?
- Who do I contact with questions later?
It helps to read the consent information carefully before agreeing, and to ask anything you are unsure about. A good registry will answer openly. Joining is your choice, and you can take your time. The clinical trials, biomarker monitoring, and genetic testing cards cover related ways of taking part in research.
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