Are you diagnosed with a primary membranoproliferative glomerulonephritis disease (MPGN, IC-MPGN, C3G, C3GN or DDD) or are you a parent of a child with an MPGN disease? We would like to hear from you!
Take our online survey to let us know what is important to you. What is it like to live with MPGN? Would you consider participation in a clinical trial? What kind of support do you need from researchers and health care professionals? The survey is anonymous and takes approximately 20-25 minutes to complete. Your responses will help us design future research studies on MPGN.
Survey questionnaire to patients aged 16 years or older: https://nettskjema.no/a/272856
Survey questionnaire to parents of patients aged below 16 years: https://nettskjema.no/a/275881
Between September 2022 and February 2023, we conducted the IMPACT survey to investigate the views of adult patients diagnosed with MPGN, IC-MPGN, C3G, C3GN or DDD, and parents of patients, regarding potential participation in future clinical trials.
KEY FINDINGS:
✓ Most patients (72%) and parents of patients (67%) would be willing to participate, or let their child participate, in a future clinical trial to test a new drug. The main motivating factor for entering a clinical trial is the hope that the new treatment will improve kidney function.
✓ Most important factors influencing a decision to participate or not in a clinical trial are:
o The types of expected side effects (69% of adult patients, 82% of parents)
o The number of biopsies to undergo (57% of adult patients, 70% of parents)
✓ Practical aspects regarding participation such as trial duration and location, and frequency of visits, were likely to be given less weight in the decision-making process.
Most respondents would want to be informed about:
o General trial results, e.g., did the drug work for the patient group? (88% of adult patients, 91% of parents)
o Individual trial results, e.g., what were my test results? (95% of adult patients, 97% of parents)
The respondents also found important to have the possibility to continue treatment for free after trial end (61% of adult patients, 73% of parents). Respondents largely supported the sharing of their data for research on other diseases (92% of parents, 88% of parents), much less for research outside of the health sector. Respondents wanted to receive more information about their own or their child’s prognosis, kidney-friendly diets, and strategies to reduce symptoms.
130 persons from Europe and else where completed the survey (97 adult respondents and 33 parents of patients). For more details, read the complete survey report.
We are sharing the survey report with patient groups, clinicians and research groups worldwide to encourage the integration of patient views in the design of future clinical trials. Feel free to help us share the report!
Thanks to all our survey respondents!
Tra settembre 2022 e febbraio 2023, è stata svolta l'INDAGINE D'IMPATTO per esplorare le opinioni degli adulti diagnosticati con MPGN, IC-MPGN, C3G, C3GN o DDD, e dei genitori dei pazienti, riguardo alla potenziale partecipazione a futuri trial clinici.
RISULTATI PRINCIPALI:
✓ La maggior parte dei pazienti (72%) e dei genitori dei pazienti (67%)sarebbe disposta a partecipare o a far partecipare il proprio figlio a un futuro trial clinico per testare un nuovo farmaco. Il principale motivo che spinge a partecipare a un trial clinico è la speranza che il nuovo trattamento migliori la funzione renale.
✓ I fattori più importanti che influenzano la decisione di partecipare omeno a un trial clinico sono:
o I tipi di effetti collateraliprevisti (il 69% dei pazienti adulti, l'82% dei genitori)
o Il numero di biopsie a cui sottoporsi (il 57% dei pazienti adulti, il 70% deigenitori)
✓ Aspetti pratici riguardanti la partecipazione, come la durata e la sede del trial e la frequenza delle visite, sembrano avere meno peso nel processo decisionale.
✓ La maggior parte dei partecipanti desidererebbe essere informato su:
o Risultati generali del trial, ad esempio “il farmaco ha funzionato per il gruppo di pazienti?” (l'88% dei pazienti adulti, il 91% dei genitori)
o Risultati individuali del trial, ad esempio “quali sono stati i miei risultati nei test?” (il 95% dei pazienti adulti, il 97% dei genitori)
✓ I partecipanti hanno anche trovato importante avere la possibilità di continuare il trattamento gratuitamente dopo la fine del trial (il 61% dei pazienti adulti, il 73% dei genitori).
✓ I partecipanti hanno in gran parte sostenuto la condivisione dei loro dati per la ricerca su altre malattie (il 92% dei genitori, l'88% dei pazienti), molto meno per la ricerca al di fuori del settore sanitario.
✓ I partecipanti desideravano ricevere ulteriori informazioni sulla prognosi propria o dei loro figli, sulle diete amiche dei reni e sulle strategie per ridurre i sintomi.
Numero partecipanti
130 persone provenienti da paesi Europei e altri paesi hanno completato l'indagine (97 risposte da adulti e 33 da genitori di pazienti).
Per ulteriori dettagli, leggere il rapporto completo dell'indagine
Stiamo condividendo il rapporto dell'indagine con gruppi di pazienti, medici e gruppi di ricerca in tutto il mondo per incoraggiare l'integrazione delle opinioni dei pazienti nella progettazione dei futuri trial clinici. Sentitevi liberi di aiutarci a condividere il rapporto!
Grazie a tutti i partecipanti alla nostra indagine!
Zwischen September 2022 und Februar 2023 führte das DECODE-Projekt die IMPACT-Umfrage durch. Das Ziel war, die Ansichten erwachsener Patienten, bei denen MPGN, IC-MPGN, C3G, C3GN oder DDD diagnostiziert wurde, und die Eltern von Patienten hinsichtlich einer möglichen Teilnahme an zukünftigen klinischen Studien zu untersuchen.
DIE WICHTIGSTEN ERGEBNISSE:
✓ Die meisten Patienten (72 %) und Eltern von Patienten (67 %) wären bereit, an einer zukünftigen klinischen Studie zum Testen eines neuen Medikaments teilzunehmen oder ihrem Kind die Teilnahme zu ermöglichen. Der wichtigste Motivationsfaktor für die Teilnahme an einer klinischen Studie ist die Hoffnung, dass die neue Behandlung die Nierenfunktion verbessern wird.
✓ Die wichtigsten Faktoren, die die Entscheidung, an einer klinischen Studie teilzunehmen oder nicht, beeinflussen, sind:
o Arten der zu erwartenden Nebenwirkungen (69 % der erwachsenen Patienten, 82 % der Eltern)
o Anzahl der zu überprüfenden Biopsien (57 % der erwachsenen Patienten, 70 % der Eltern)
✓ Praktische Aspekte der Teilnahme wie Versuchsdauer und -ort sowie Häufigkeit der Besuche wurden im Entscheidungsprozess wahrscheinlich weniger berücksichtigt.
✓ Die meisten Befragten möchten über Folgendes informiert werden:
o Allgemeine Studienergebnisse, z. B. hat das Medikament bei der Patientengruppe gewirkt? (88 % der erwachsenen Patienten, 91 % der Eltern)
o Einzelne Testergebnisse, zum Beispiel, was waren meine Testergebnisse? (95 % der erwachsenen Patienten, 97 % der Eltern)
✓ Wichtig war den Befragten auch die Möglichkeit, die Behandlung nach Ablauf der Probezeit kostenfrei fortsetzen zu können (61 % der erwachsenen Patienten, 73 % der Eltern).
✓ Die Befragten befürworteten weitgehend die Weitergabe von Daten für die Erforschung anderer Krankheiten (92 % der Eltern, 88 % der Eltern), wohingegen viel weniger Befragte eine Weitergabe für die Erforschung außerhalb des Gesundheitssektors befürworteten.
✓ Die Befragten wünschten sich mehr Informationen über die eigene Prognose oder die ihres Kindes, nierenschonende Ernährung und Strategien zur Symptomreduktion.
130 Personen aus Europa und anderen Ländern haben an der Umfrage teilgenommen (97 erwachsene Befragte und 33 Eltern von Patienten).
Weitere Informationen finden Sie im vollständigen Umfragebericht.
Wir teilen den Umfragebericht mit Patientengruppen, Klinikern und Forschungsgruppen weltweit, um die Einbeziehung von Patientenmeinungen in die Gestaltung zukünftiger klinischer Studien zu fördern. Bitte helfen Sie uns, indem Sie den Bericht teilen!
Vielen Dank an alle unsere Befragten!
Tussen september 2022 en februari 2023 voerde het DECODE-project de IMPACT-vragenlijst uit om inzicht te krijgen in de ervaringen en perspectieven van volwassen patiënten met de diagnose MPGN, IC-MPGN, C3G, C3GN of DDD en ouders van patiënten met betrekking tot mogelijke deelname aan toekomstige klinische onderzoeken.
De belangrijkste bevindingen:
✓ De meeste patiënten (72%) en ouders van patiënten (67%) zijn bereid om deel te nemen, of hun kind te laten deelnemen, aan een toekomstige klinische studie om een nieuw geneesmiddel te testen. De belangrijkste motiverende factor om deel te nemen aan een klinische studie is de hoop dat de nieuwe behandeling de nierfunctie zal verbeteren.
✓ De belangrijkste factoren die van invloed zijn op een beslissing om al dan niet deel te nemen aan een klinische studie zijn:
o De verwachte bijwerkingen (69% van de volwassen patiënten, 82% van de ouders)
o Het aantal te ondergaan biopten (57% van de volwassen patiënten, 70% van de ouders)
✓ Praktische aspecten met betrekking tot deelname, zoals de duur en locatie van het onderzoek en het aantal bezoeken, zijn minder belangrijk in het besluitvormingsproces.
✓ De meeste respondenten willen geïnformeerd worden over:
o Algemene onderzoeksresultaten, bijvoorbeeld, werkte het medicijn voor de patiëntengroep? (88% van de volwassen patiënten, 91% van de ouders)
o Individuele studieresultaten, bijv. wat waren mijn testresultaten? (95% van de volwassen patiënten, 97% van de ouders)
✓ De respondenten vinden het ook belangrijk om de mogelijkheid te hebben om de behandeling gratis voort te zetten na afloop van het onderzoek (61% van de volwassen patiënten, 73% van de ouders).
✓ De respondenten steunen grotendeels het delen van hun gegevens voor onderzoek naar andere ziekten (92 % van de ouders, 88 % van de ouders), veel minder voor onderzoek buiten de gezondheidssector.
✓ Respondenten willen meer informatie ontvangen over de prognose van zichzelf of hun kind, niervriendelijke diëten en strategieën om de symptomen te verminderen.
130 personen uit Europa en daarbuiten vulden de enquête in (97 volwassen respondenten en 33 ouders van patiënten).
Lees voor meer informatie het volledige rapport.
We delen het onderzoeksrapport met patiëntenorganisaties, clinici en onderzoeksgroepen over de hele wereld om de integratie van het patiëntenperspectief in het ontwerp van toekomstige klinische onderzoeken aan te moedigen. Voel je vrij om ons te helpen het rapport te delen!
Dank aan al onze respondenten!
Avez-vous reçu un diagnostic de glomérulonéphrite membranoproliférative primaire (GNMP, IC-MPGN, C3G, C3GN ou DDD) ou êtes-vous parent d'un enfant atteint d'une maladie GNMP? Nous aimerions connaître votre opinion! Répondez à notre sondage en ligne pour nous informer de ce qui est important pour vous. Comment vit-on avec GNMP? Envisageriez-vous une participation à un essai clinique? De quel type de soutien avez-vous besoin de la part des chercheurs et des professionnels de santé? Le sondage est anonyme et prend environ 20 à 25 minutes à compléter. Vos réponses nous aideront à concevoir de futures études de recherche sur les maladies GNMP.
Questionnaire d'enquête auprès de patients âgés de 16 ans ou plus: https://nettskjema.no/a/276103
Questionnaire d'enquête auprès de parents de patients âgés de moins de 16 ans: https://nettskjema.no/a/276108
Er du diagnostisert med en primær membranoproliferativ glomerulonefritt (MPGN, IC-MPGN, C3G, C3GN eller DDD) eller er du forelder til et barn med en MPGN-sykdom? Vi vil gjerne høre fra deg! Ta vår nettbaserte undersøkelse for å fortelle oss om hva som er viktig for deg. Hvordan er det å leve med MPGN? Ville du vurdere en deltakelse i en klinisk studie? Hva slags støtte trenger du fra forskere og helsepersonell? Undersøkelsen er anonym og tar cirka 20-25 minutter å fullføre. Svarene dine vil hjelpe oss med å designe fremtidige forskningsstudier på MPGN.
Spørreundersøkelse til pasienter som er 16 år og eldre: https://nettskjema.no/a/276091
Spørreundersøkelse til foreldre av pasienter under 16 år: https://nettskjema.no/a/276194
Are you diagnosed with a primary membranoproliferative glomerulonephritis disease (MPGN, IC-MPGN, C3G or DDD) or are you a parent of a child with an MPGN disease? We would like to hear from you!
Take our online survey to let us know what is important to you. What is it like to live with MPGN? Would you consider participation in a clinical trial? What kind of support do you need from researchers and health care professionals? The survey is anonymous and takes approximately 20-25 minutes to complete. Your responses will help us design future research studies on MPGN.
If you are a patient click here
If you are a parent click here
Hai ricevuto una diagnosi di glomerulonefrite membranoproliferativa primaria (MPGN, IC-MPGN, C3G o DDD) o sei un genitore di un bambino con una malattia MPGN? Abbiamo bisogno del tuo aiuto!
Partecipa al nostro sondaggio online per farci sapere cosa è importante per te. Com'è vivi con la MPGN? Prenderesti in considerazione la partecipazione a uno studio clinico? Che tipo di supporto vorresti dai ricercatori e dal personale medico? Il sondaggio è anonimo e richiede circa 20-25 minuti per essere completato. Le tue risposte ci aiuteranno a progettare futuri studi di ricerca sulla MPGN.
Se sei un paziente clicca qui
Se sei un genitore clicca qui
SURVEY
If you would like to help us investigating these questions, you can click on the link below and answer our online survey. Your participation in the survey is voluntary. The survey is anonymous and takes approximately 20-25 minutes to complete. You must consent to the use of your data for research when entering the survey. If you are 16 years of age or older and are diagnosed with an C3G/IC-MPGN disease, you can complete the survey here: LINK
If you are a parent of a child younger than 16 years, you can complete the survey here: LINK
DIGITAL INDIVIDUAL INTERVIEW
Our research team is also looking for adult volunteers aged 18 years or older and parents of children diagnosed with C3G/IC-MPGN and interested in discussing in more detail the topics addressed in this survey. If you are interested in undergoing an individual 1-hour online interview in English with us, you can contact us after having completed the survey. An email is provided at the end of the survey questionnaire. We will send you information about what participation in the interview entails, and an informed consent form. If you consent to be interviewed, we will ask you to sign the inform consent and send it back to us electronically. We will take further contact with you to appoint a suitable time for the interview. The interview will be conducted online using a digital platform (e.g.,Teams) and will be like a friendly conversation, with no right or wrong answers. The interview will be audio recorded to make it easier for us to analyse the data, and the recording will be destroyed after study completion.
General results from the survey and the interviews will be published on this web page.
THANK YOU FOR YOUR HELP!
SURVEY
If you would like to help us investigating these questions, you can click on the link below and answer our online survey. Your participation in the survey is voluntary. The survey is anonymous and takes approximately 20-25 minutes to complete. You must consent to the use of your data for research when entering the survey. If you are 16 years of age or older and are diagnosed with an C3G/IC-MPGN disease, you can complete the survey here: LINK
If you are a parent of a child younger than 16 years, you can complete the survey here: LINK
DIGITAL INDIVIDUAL INTERVIEW
Our research team is also looking for adult volunteers aged 18 years or older and parents of children diagnosed with C3G/IC-MPGN and interested in discussing in more detail the topics addressed in this survey. If you are interested in undergoing an individual 1-hour online interview in English with us, you can contact us after having completed the survey. An email is provided at the end of the survey questionnaire. We will send you information about what participation in the interview entails, and an informed consent form. If you consent to be interviewed, we will ask you to sign the inform consent and send it back to us electronically. We will take further contact with you to appoint a suitable time for the interview. The interview will be conducted online using a digital platform (e.g.,Teams) and will be like a friendly conversation, with no right or wrong answers. The interview will be audio recorded to make it easier for us to analyse the data, and the recording will be destroyed after study completion.
General results from the survey and the interviews will be published on this web page.
THANK YOUFOR YOUR HELP!
