What exactly is a medical register?

A medical registry collects the experiences of many affected individuals over a long period of time. To improve care, a registry can record Parkinson’s symptoms (motor and non-motor), therapies and side effects, lifestyle and quality of life – and how all of this changes over time. In this article, we would like to show why a global, patient-led registry is important for Parkinson’s research. We report on where we stand in setting up the Kill Parkinson’s Registry and what we are doing differently.

For a quick introduction to the disease, see also our Parkinson’s Disease Basics.

Examples of global healthcare registries

The following are examples of internationally significant health registries:

VigiBase (WHO)
The WHO’s global database VigiBase for Individual Case Safety Reports (ICSRs) on suspected adverse drug reactions is an internationally significant pharmacovigilance registry.

WHO ICTRP platform
The WHO International Clinical Trials Registry Platform (ICTRP) is a platform that aggregates data from many national and regional trial registries, thus forming a global “meta-registry” for clinical trials.

GISAID / GISRS / WHO
GISAID operates databases (EpiFlu, EpiCoV) for the global collection and analysis of influenza virus and SARS-CoV-2 genome sequences and works closely with the WHO network GISRS.

MSBase Register
In the field of multiple sclerosis, MSBase is an international, web-based register with tens of thousands of patients from many countries and is considered the world’s largest organised MS register cohort.

Global Cancer Observatory (IARC/WHO)
The Global Cancer Observatory (GCO) of the IARC/WHO collects and presents data from numerous population-based cancer registries worldwide (including via GLOBOCAN and other subsites) and works closely with national/regional registry networks.

They demonstrate how standardised, cross-border data sets accelerate research, enable comparisons of care and allow safety signals to be identified at an early stage – this is precisely what we are aiming to achieve with the Kill Parkinson’s Register.

What is the purpose of a Parkinson’s disease registry?

A Parkinson’s registry improves the quality of life for patients today and accelerates research tomorrow. For you as a patient, the registry mainly provides guidance. You can see which therapeutic approaches have helped others with similar symptoms, where difficulties arise, and which combinations of exercise, diet, sleep, or medication are more often associated with a better quality of life.

Example questions that a parkinson’s disease register could answer

• Which combinations of medication, exercise, sport, sleep and nutrition are associated with greater independence and quality of life at different stages?
• How do non-motor symptoms cluster – and do clusters predict later progression?
• Are there regional/social differences in both prevalence and access to treatment?
• If side effects occur, how often and under what conditions?
• Which combinations of medication, exercise, sleep and nutrition are associated with greater independence and quality of life at different stages?
• How do non-motor symptoms cluster – and do clusters predict later progression?
• Are there regional/social differences in both prevalence and access to treatment?
• If side effects occur, how often and under what conditions?

Register vs. clinical trial

• Purpose: Registers observe everyday life; studies test interventions.
• Participation: Registers are broad and inclusive; studies have strict inclusion/exclusion criteria, often with on-site enrolment in clinics.
• Endpoints: Registries measure healthcare and everyday outcomes; studies measure endpoints.
• Interaction: Registers help to plan better studies – and to classify study results in practice.

Why is a patient-led, global Kill Parkinson’s registry necessary?

Kill Parkinson is an independent, patient-led non-profit organisation with the goal of defeating Parkinson’s disease as a neurodegenerative disorder by linking the global swarm intelligence of approximately 10 million people affected by the disease. A global approach is important because genetics, environment and access to care vary greatly – as do symptoms, efficacy and side effects. A global picture helps research, as does a large number of donors.

What makes the Kill Parkinson’s Registry special

• Patient-led: Founded and run by those affected and their families
• Collective knowledge: As people affected by the condition, we have many years of knowledge about therapies and successes that must be utilised.
• Accessible: The register is designed to be simple, making it easy to use for all age groups and on many devices.
• Biographies: People with Parkinson’s disease often have a long life history prior to diagnosis, which offers many insights for research.
• Volunteering: We work on a voluntary basis, without any financial interests and in addition to our jobs/studies and family commitments.
• Causal therapy: We are seeking a breakthrough to cure PD and prevent new cases.
• Independence: We also want to implement our ideas freely and without influence.
• Global & inclusive: Designed for diversity across countries, age groups and care contexts.
• Big Data & AI: We are convinced that our collective knowledge will enable us to identify groundbreaking patterns in the fight against PD.
• Open Science: Findings are published; pseudonymised data sets are made available to researchers.
• Therapy Insights: Results on the community’s therapy successes and failures help you make your own choice.
• Alternative therapies: Conventional medicine has its limitations when it comes to Parkinson’s disease. We highlight the successes of the PD community with vitamin B1/thiamine, vitamin B3, Mucuna pruriens, UDCA, N-acetyl-DL-leucine (ADLL) and many other PD therapy approaches.
• 100% Donation-funded: We work economically and your donation primarily goes towards safety, infrastructure and patient information.

Please actively support our mission.

This is how our Parkinson’s register will work

Sign up for our most important news and join the Parkinson’s Register waiting list .

1. Follow us on our social media channels to get the latest research results even before they are published.
2. We plan to launch the Parkinson’s Register in the course of 2026. Our current schedule is as follows:
   • done in Q1 2026: Launch of a reduced beta version for testing within the team and our network
   • currently in Q2/Q3 2026: Testing of the Parkinson’s registry by medical experts and Parkinson’s influencers
   • Q3/Q4: Launch of the beta version for the community
3. Official launch with full functionality and global communication at the end of 2026/beginning of 2027
4. From 2027: Open data releases and external research collaborations.
5. From 2027 onwards, aggregated, anonymised insights from the community to support your therapy

Subscribe to our news and we will inform you when it launches. Help speed up the development of the registry with your personal donation.

P.S.

Since participating in our Kill Parkinson’s Registry is much more interesting in pairs, we will connect you with Kipa and his large team of experts. He is looking forward to meeting you soon!

FAQs about the Kill Parkinson’s Register

Is the Parkinson’s Register already live?

– We are currently building the platform and working hard with our team of over 20 volunteers to launch in 2026. Join the waiting list to get involved early and receive early insights into therapy and research.

Is this a clinical study?
– No. It is a registry where patients can gather and share their knowledge. However, it is intended to improve medical studies on Parkinson’s disease – ideally in the field of basic research.

Who owns the data in the register?
– You. We manage your knowledge and information for the common good. We only pass on anonymised data to selected research projects and collaborations, and you can delete your data at any time.

Is there a cost to participate?
– There are no plans to charge a participation fee. Donations help us build faster and make results openly available.

Do you accept international participants?
– Yes, that is absolutely the point, that people with Parkinson’s worldwide participate, as different genetics, environments and care contexts are important. We will start directly in several languages.

Conclusion on the Kill Parkinson’s Register

The Kill Parkinson Registry will collect the collective knowledge of the global Parkinson’s community, which is currently estimated at over ten million people. We want to use information from biographies as well as on current Parkinson’s treatments to achieve these three goals:

• Quality of life: Living with Parkinson’s disease is challenging. That is why our members document their therapeutic successes and failures. We summarise these in an easy-to-read report in order to improve life with Parkinson’s disease.
• Prevention: To prevent our children, partners, friends and relatives from developing Parkinson’s disease, we provide neutral and independent reports on the latest studies contributing to the prevention of Parkinson’s disease.
• Cure: Ultimately, we all hope that the insights gathered by our global Parkinson’s community in the Parkinson’s Registry and made available to researchers will lead to a breakthrough in causal therapy and a cure for Parkinson’s disease.

If you have Parkinson’s disease or are caring for someone with Parkinson’s, you can become part of this registry. Sign up for the waiting list with no obligation or support the development of the registry with a donation.