Advancements in Parkinson's Disease Treatment
A new registry aims to improve Parkinson's treatments through data collection.
D Santos-García, G González-Ortega, P Sánchez Alonso, A Planas-Ballvé, R García Ramos, I Cabo López, M Blázquez Estrada, A Sánchez Ferro
― 7 min read
Table of Contents
- Diagnosis of Parkinson's Disease
- The Challenges of Living with Parkinson's Disease
- The Evolution of Device-Aided Therapies
- The Importance of Research and Data Collection
- What the Registry Will Cover
- The Visits: What to Expect
- Why This Registry is Valuable
- Special Considerations for Advanced Parkinson's Disease
- Looking Ahead: The Future of Parkinson's Treatment
- Conclusion
- Original Source
Parkinson's Disease (PD) is a brain disorder that affects movement. It is the second most common neurodegenerative disease after Alzheimer's. Imagine trying to enjoy your favorite dance while your brain is telling your body to stand still – that's a bit like what people with Parkinson’s experience. PD happens when certain brain cells that produce dopamine, a neurotransmitter that helps control movement, die or become impaired. This lack of dopamine leads to movement issues like tremors, stiffness, and slowness of movement, as well as non-motor Symptoms like mood changes and sleep problems.
Diagnosis of Parkinson's Disease
Diagnosing Parkinson's disease isn’t as easy as a simple test; it requires careful evaluation. Doctors look for specific signs and symptoms based on criteria established by medical experts. They check for the presence of parkinsonism, which is a fancy word for the movement issues associated with PD. If someone has symptoms but also has other signs that point away from PD, doctors might consider other conditions.
A key hint that someone has PD is how they respond to Medications that increase dopamine levels. One common medication is called levodopa. If a person with suspected PD shows improvement after taking this medication, it’s a strong indication that they indeed have the disease. However, if there’s no improvement, it might mean that it’s not PD after all.
The Challenges of Living with Parkinson's Disease
At first, medications can work wonders for people with Parkinson's. However, as time goes on, many people start to face complications. These complications can be frustrating and difficult. They might include fluctuations in motor and non-motor symptoms, which means there are good days when they feel fine, and bad days when symptoms come back with a vengeance.
People might find themselves feeling like they are living in a yo-yo world, swinging between feeling good and experiencing disabling symptoms. A common term you might hear is "OFF episodes," which is when the symptoms return, and the medication doesn’t seem to help enough.
Some people may need additional treatments because standard medications aren’t enough. These are called device-aided therapies (DATs) and include methods like deep brain stimulation or continuous infusion of medications, which sound fancy but are basically just ways to help manage symptoms.
The Evolution of Device-Aided Therapies
For years, options for DATs were limited to just a few therapies. However, new treatments have recently come into play, expanding the options for people with PD. These new therapies are not just variations of older treatments but offer different methods to deliver medication or treat symptoms. The exciting part is that some of these options are less invasive, which means patients might get the care they need without undergoing more complicated procedures.
As treatments evolve, so does the conversation around them. Healthcare professionals are now discussing how best to use these new therapies in everyday treatment and whether certain therapies should be the first option.
The Importance of Research and Data Collection
Understanding all the different therapies and how effective they are is crucial. That’s why a new registry has been set up to keep track of people with Parkinson's who are using DATs. This registry is like a giant notebook that collects information on various treatments, the people receiving them, and how they are doing over time.
The goal is to learn which therapies work best, who they work best for, and how safe they are. It is an exciting time for finding better ways to help those with Parkinson's since the more data collected, the better the understanding of treatment outcomes.
What the Registry Will Cover
This registry will be open to many healthcare centers across Spain, which means a diverse group of patients will be included. The focus will be on people who begin treatments starting in 2024, and researchers will collect a mountain of data over the next ten years.
During their visits, patients will share all sorts of information about their daily lives, as well as their experiences with the disease. This will include details on their age, the symptoms they’re experiencing, what treatments they’ve tried, and how well these treatments worked.
The Visits: What to Expect
Patients enrolled in the registry will go through a series of visits. The first visit will happen when they are first diagnosed and recommended for treatment. The second visit will take place when they start the treatment, and follow-up visits will happen every six months for the first year, and then yearly after that for up to five years.
During these visits, all kinds of useful information will be recorded which will help paint a clearer picture of how these therapies are working. Patients will be asked about their symptoms, any side effects they may be experiencing, and how their quality of life has changed.
Why This Registry is Valuable
Having such a registry is like getting a backstage pass to see how treatments actually work in real life rather than just in clinical trials. It gives doctors and researchers the tools to compare different therapies, see how effective they are, and even discover why some patients may switch from one therapy to another.
This kind of data can also highlight any differences between treatments based on factors like gender or the stage of the disease. By collecting this information over time, the hope is to identify trends that can inform better treatment options moving forward.
Special Considerations for Advanced Parkinson's Disease
Advanced Parkinson's disease can feel like a whole new ball game. Patients may experience symptoms that are harder to manage, and the need for DATs becomes even more important. However, a significant number of patients with advanced PD aren’t receiving the help they could be. In many cases, patients might be considered "clinically stable" and thus not candidates for more advanced therapies.
This is where the registry also hopes to provide insight. By understanding why some patients are not receiving DATs, healthcare professionals can work on ways to change this and ensure they are getting the best care possible.
Looking Ahead: The Future of Parkinson's Treatment
As the registry collects data, it will reveal a wealth of information about how patients with PD respond to various therapies. The exciting part is that this knowledge isn’t just limited to Spain. It could inspire other countries to set up similar Registries or even join in this one, creating a larger pool of data that could benefit everyone.
Who knows? One day, we might look back at this initiative as a pivotal moment in improving the lives of people with Parkinson's.
Conclusion
Parkinson's disease is more than just a movement disorder; it's a challenge that affects daily life in many ways. As new treatments arrive and exciting research is conducted, the future looks brighter for those living with PD.
The registry aims to gather valuable data that may lead to improvements in treatment options, better understanding of the disease, and ultimately, better care for individuals with Parkinson’s. We're all rooting for those dealing with this condition, and research like this gives hope for more effective therapies and a better quality of life.
So, here's to keeping our fingers crossed that this new registry becomes a powerful tool for change and improvement in the world of Parkinson's disease!
Original Source
Title: Device-aided therapies (DATs) in Parkinson's disease (PD). The DATs-PD GETM Spanish Registry.
Abstract: Background and objectiveDevice-aided therapies (DATs) are treatments indicated for people with Parkinso[n]s disease (PwP) with clinical fluctuations that are not optimally controlled with conventional medication. New DATs have recently emerged such as levodopa-entacapone-carbidopa intestinal gel infusion (LECIG) and subcutaneous infusion of foslevodopa/foscarbidopa (fLD/fCD). It is necessary to know the differences between different DATs. Patients and MethodsWe present here the protocol study of the DATs-PD GETM Spanish Registry. This is a descriptive, observational, prospective, multicenter, open study that is proposed as a clinical registry with progressive inclusion of PwP treated with a DAT in daily clinical practice conditions in more 40 centers from Spain for 10 years. The principal aim is to know the type of DAT that PwP in our country (Spain) receive. Specific objectives are to compare the clinical characteristics of the patients, the effectiveness, safety and tolerability, to identify predictors of a good response and to analyze the response by groups (gender, disease duration, phenotype, etc.). There is a baseline visit (V1; indication of the therapy), start visit (V2; initiation of the therapy) and follow-up visits at 6 months {+/-} 3 months (V3_6M) and after this annually {+/-} 3 months (V3_12M, V3_24M, etc.). ResultsThe registry is on-going. The first patient was included on Abril 10, 2024. Patient recruitment and follow-up will be conducted until 31/DEC/2033. The estimate is to reach a minimum sample size of at least 3,000 patients. ConclusionThe present study will help improve the care of PD patients treated with a DAT. Authors RolesSantos-Garcia D: conception, organization, and execution of the project; funding acquisition; supervision; writing of the first draft of the manuscript; recruitment and/or evaluation of participants; entering data into the database. Gonzalez-Ortega G: preparation and development of the database; registration of participants in the platform; recruitment and/or evaluation of participants; entering data into the database; review and critique. Sanchez Alonso P: recruitment and/or evaluation of participants; entering data into the database; review and critique. Planas-Ballve A: recruitment and/or evaluation of participants; entering data into the database; review and critique. Garcia Ramos R: recruitment and/or evaluation of participants; entering data into the database; review and critique. Cabo Lopez I: recruitment and/or evaluation of participants; entering data into the database; review and critique. Blazquez Estrada M: recruitment and/or evaluation of participants; entering data into the database; review and critique. Sanchez Ferro A: collaboration in the coordination of the project as coordinator of GETM; recruitment and/or evaluation of participants; entering data into the database; review and critique. Financial Disclosures for the previous 12 monthsSantos-Garcia D. has received honoraria for educational presentations and advice service by Abbvie, UCB Pharma, Lundbeck, KRKA, Zambon, Bial, Italfarmaco, Teva, Archimedes, Esteve, Stada, Merz, and grants from the "Fundacion Professor Novoa Santos" as a result of the "CONVOCATORIA DE AYUDAS PARA LA REALIZACION DE PROYECTOS DE INVESTIGACION PARA GRUPOS EMERGENTES Y ASOCIADOS DEL INIBIC (2023/2024)". Gonzalez-Ortega G. has received honoraria for educational purposes from ABBIE, Zambon, Bial, Esteve and Italfarmaco Sanchez Alonso P. has received honoraria for educational presentations and advice service by Abbvie, UCB Pharma, Lundbeck, KRKA, Zambon, Bial, and Teva. Planas-Ballve A:None. Garcia Ramos R. has received honoraria and grants for lecturing, advisory services from Abbvie, Zambon, Bial, Merk, Stada. Cabo Lopez I. has received honoraria for educational presentations and advice service by Abbvie, Zambon, Bial, Orion, Italfarmaco and Esteve. Blazquez Estrada M. has received honoraria for educational presentations by Dysport, Esteve, Bial, Italfarmaco, Boston Sc. and Stada and for advice service by Esteve, Bial, Suazio. Sanchez Ferro A. has received: grants or contracts from ERA-NET Horizon 2020 program JPCOFUND2 (reference number HESOCARE-329-073), MDS (eDiary project), Instituto de Salud Carlos III (reference number P122/01177); consulting fees from Abbvie, Esteve, Orion Pharma, and Prim; and payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing, or educational events from Abbvie, Bayer, Esteve, MDS Society, EAN, Novartis, Monitor, Organon, Roche, SEN, Stada, Teva, and Zambon.
Authors: D Santos-García, G González-Ortega, P Sánchez Alonso, A Planas-Ballvé, R García Ramos, I Cabo López, M Blázquez Estrada, A Sánchez Ferro
Last Update: 2024-12-10 00:00:00
Language: English
Source URL: https://www.medrxiv.org/content/10.1101/2024.12.07.24318643
Source PDF: https://www.medrxiv.org/content/10.1101/2024.12.07.24318643.full.pdf
Licence: https://creativecommons.org/licenses/by/4.0/
Changes: This summary was created with assistance from AI and may have inaccuracies. For accurate information, please refer to the original source documents linked here.
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