IMPACT survey: Identifying the perspectives of MPGN patients and/or parents of patients regarding potential participation in future clinical trials

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The survey is available in different languages (English, Italian, Dutch, German, French, Norwegian).


ENGLISH


We would like to hear from you!

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


ITALIAN


Abbiamo bisogno del tuo aiuto!

Hai ricevuto una diagnosi di glomerulonefrite membranoproliferativa primaria (MPGN, IC-MPGN, C3G, C3GN 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. Come 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.

Questionario per pazienti di età pari o superiore a 16 anni: https://nettskjema.no/a/276127
Questionario per i genitori di pazienti di età inferiore ai 16 anni:
https://nettskjema.no/a/276135


GERMAN


Melden Sie sich bei uns!

Wurde bei Ihnen oder Ihrem Kind primäre membranproliferative Glomerulonephritis (MPGN, IC-MPGN, C3G, C3GN oder DDD) diagnostiziert? Durch Ihre Teilnahme an einer Online-Befragung können Sie uns wissen lassen, was Ihnen wichtig ist. Wie ist das Leben mit MPGN? Würden Sie die Teilnahme an einer klinischen Studie in Betracht ziehen? Welche Hilfe benötigen Sie von Forschern sowie medizinischen Fachkräften? Die Teilnahme ist anonym und dauert ca. 20-25 Minuten.Ihre Antwort wird uns helfen, die Zukunft der künftigen Forschung auf dem Gebiet MPGN zu gestalten.

Fragebogen für Patienten ab 16 Jahren: https://nettskjema.no/a/276177
Fragebogen für Eltern von Patientinnen und Patienten unter 16 Jahren: https://nettskjema.no/a/276185


DUTCH


We horen graag van je!

Hebt u membraneuze proliferatieve glomerulonefritis (MPGN) of een aandoening die daaraan gerelateerd is (IC-MPGN, C3G, C3GN of Dense Deposit Disease (DDD))? Of bent u ouder van een kind met een van deze nierziektes? Vul dan onze online vragenlijst in om ons te laten weten wat belangrijk is voor u. Hoe is het bijvoorbeeld om MPGN te hebben; hoe ziet uw leven eruit? Zou u deelnemen aan een klinisch onderzoek? En wat voor informatie en ondersteuning heeft uw nodig van onderzoekers en zorgverleners? De vragenlijst is anoniem en het invullen ervan duurt ongeveer 20-25 minuten. Uw antwoorden helpen ons bij het opzetten van (klinische) onderzoeken naar MPGN.

Enquêtevragenlijst voor patiënten van 16 jaar of ouder:
https://nettskjema.no/a/276154
Enquêtevragenlijst voor ouders vanpatiënten die jonger zijn dan 16 jaar:
https://nettskjema.no/a/276171 


FRENCH


Nous aimerions connaître votre opinion !

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


NORWEGIAN


Vi vil gjerne høre fra deg!

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


We would like to hear from you!

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


Abbiamo bisogno del tuo aiuto!

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


We would like to hear from you!

If you are a patient diagnosed with C3G/IC-MPGN, or a parent of a child diagnosed with C3G/IC-MPGN, we would like to hear your thoughts:
  • What is it like to live with the disease or have a child living with the disease ?
  • Would you ever consider participating in a clinical trial, or let your child participate in one ?
  • What would be important for you when making the decision to participate or not in a trial ?
  • What are your views regarding the sharing of your data among researchers ?
  • What kind of help and support do you need to live with your disease ?
  • What do you expect from the research community in the future ?


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!


We would like to hear from you!

If you are a patient diagnosed with C3G/IC-MPGN, or a parent of a child diagnosed with C3G/IC-MPGN, we would like to hear your thoughts:
  • What is it like to live with the disease or have a child living with the disease ?
  • Would you ever consider participating in a clinical trial, or let your child participate in one ?
  • What would be important for you when making the decision to participate or not in a trial ?
  • What are your views regarding the sharing of your data among researchers ?
  • What kind of help and support do you need to live with your disease ?
  • What do you expect from the research community in the future ?


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!

Patient organizations contributing to the project