GMMG Multiple Myeloma Registry
This study, called the GMMG Multiple Myeloma Registry, is designed to keep track of the long-term health of people in Germany with multiple myeloma. These individuals have previously participated in treatment studies run by a group called the German-Speaking Myeloma Multicenter Group (GMMG). The main goal is to collect information on how patients do over many years, looking at things like how long they live, how long they stay free from their cancer getting worse, and how their treatment plans change over time. By combining this new information with data from previous studies, researchers hope to get a clearer picture of the best ways to treat multiple myeloma and improve patients' lives. This is an 'observational' study, meaning patients receive their usual care, and researchers simply gather information without giving new treatments as part of this specific registry.
Överblick
Vad handlar denna studie om?
This registry is a long-term study that collects important health information from people in Germany who have multiple myeloma. Multiple myeloma is a type of cancer that affects plasma cells in the bone marrow. The people included in this registry have already taken part in previous treatment studies led by a group called the German-Speaking Myeloma Multicenter Group (GMMG).
The main idea behind this registry is to continue gathering information about these patients over many years, even after their original treatment studies have finished. This helps doctors and researchers understand the long-term effects of different treatments. They want to see how long people live overall, how long they stay well without their cancer getting worse, and what happens to their health over a long period. By combining this new, ongoing information with what they already know from the previous studies, they can learn a great deal about the best ways to manage multiple myeloma.
This kind of study is really important because it helps improve future care for others with multiple myeloma. It provides valuable insights into how treatments work in the real world and over time, allowing doctors to make more informed decisions and develop better treatment strategies. It started in late 2022 and involves many cancer centers across Germany.
Viktiga punkter
- This is a registry for people with multiple myeloma who were in past GMMG studies.
- It collects long-term health information to understand treatment effects over many years.
- No new treatments are given; you'll receive your usual care.
- Information is collected every 6-12 months.
- Your participation helps improve future care for multiple myeloma patients.
- You can withdraw from the registry at any time.
Vem kan vara berättigad?
To be part of this registry, you must have previously participated in a treatment study run by the German-Speaking Myeloma Multicenter Group (GMMG). This means you would have already been treated for multiple myeloma as part of one of their specific research trials.
People who had a condition called organ amyloidosis at the time they were diagnosed with multiple myeloma would not be able to join this registry. Organ amyloidosis is when abnormal proteins build up in organs and can cause health problems.
This registry is open to adults aged 18 and older, and it includes both men and women.
Kan denna studie passa dig?
Svara på dessa snabba frågor för att se om du kan vara berättigad. Detta är endast en vägledning — forskarteamet fattar det slutgiltiga beslutet.
- Have I been diagnosed with multiple myeloma?
- Did I previously take part in a treatment study from the GMMG group?
- Är jag 18 år eller äldre?
- Did I NOT have organ amyloidosis when I was first diagnosed with multiple myeloma?
Vad innebär deltagande?
If you are eligible and agree to take part, your contribution to this registry will mainly involve allowing researchers to continue gathering information about your health. You will continue to receive your standard medical care from your own doctors, as you normally would. This study does not involve new treatments or medical procedures.
Researchers will collect information every six months until your cancer progresses (gets worse). After that, they will collect information once a year. This data includes details about your treatment, your current health, and how you are doing. The information collected will be kept private and stored in a secure electronic system. You can choose to stop participating at any time.
Potentiella risker och fördelar
Locations (35)
- HELIOS Klinikum, Klinik für Hämatologie, Onkologie und ImmunologieVerifierat postnummerBerlin, Tyskland· Rekrytering
- Charité Campus Benjamin Franklin, III. Med. Abt. (Hämatologie/Onkologie)Verifierat postnummerBerlin, Tyskland· Rekrytering
- Klinikum Bielefeld, Klinik für Hämatologie, Onkologie und PalliativmedizinVerifierat postnummerBielefeld, Tyskland· Rekrytering
- Medizinische Universitätsklinik, KnappschaftskrankenhausVerifierat postnummerBochum, Tyskland· Rekrytering
- Universitätsklinikum Bonn, Medizinische Klinik und Poliklinik III, Schwerpunkt Onkologie, Hämatologie und RheumatologieVerifierat postnummerBonn, Tyskland· Rekrytering
- Klinikum Chemnitz GmbH, Innere Medizin IIIVerifierat postnummerChemnitz, Tyskland· Rekrytering
- Universitätsklinikum Köln, Klinik I - Innere MedizinVerifierat postnummerKöln, Tyskland· Rekrytering
- Onkologisches Studienzentrum DarmstadtVerifierat postnummerDarmstadt, Germany· Rekrytering
- Klinikum Darmstadt, Med. Klinik V, Hämatologie/OnkologieVerifierat postnummerDarmstadt, Germany· Rekrytering
- Universitätsklinikum Düsseldorf, Klinik für Hämatologie,Onkologie und Klin. ImmunologieVerifierat postnummerDüsseldorf, Tyskland· Rekrytering
- Universitätsklinik ErlangenVerifierat postnummerErlangen, Tyskland· Rekrytering
- Universitätsklinikum Essen, Klinik für Hämatologie und StammzelltransplantationVerifierat postnummerEssen, Tyskland· Rekrytering
Vanliga frågor
What is the main goal of this registry?
The main goal is to collect long-term health information from people with multiple myeloma who were in previous GMMG treatment studies, to understand how treatments affect them over time.
Will I receive new treatment as part of this study?
No, this is an observational study. You will continue to receive your standard medical care from your own doctors, and no new treatments are given as part of this registry.
How often will my information be collected?
Your health information will be collected every six months until your cancer progresses, and then once a year after that.
Vilken typ av information kommer att samlas in?
Researchers will collect details about your treatments, how your health is doing, and important milestones like how long you stay well or if your condition changes.
Kan jag sluta delta om jag ändrar mig?
Yes, you can choose to stop participating in the registry at any time, and this will not affect the medical care you receive.
Hur du får reda på mer
Eileen Kurre
Prata alltid med din läkare eller specialist innan du bestämmer dig för att delta i en studie.
Intresserad av att delta?
Diskussion
Gemenskapsdiskussion
Drivs av vårt forum på community.patient.info. Var vänlig och respektfull — detta är inte medicinsk rådgivning.