Name File Type Size Last Modified
DF1 Summary data.pdf application/pdf 446.8 KB 11/26/2020 04:49:AM
DF2 Common concerns shared on helpline.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 39.8 KB 11/26/2020 09:32:AM
DF3 Positive and negative impacts on groups.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 25.2 KB 11/25/2020 08:44:PM
DF4 Help for the future requested by the groups.docx application/vnd.openxmlformats-officedocument.wordprocessingml.document 26.4 KB 11/25/2020 08:45:PM

Project Citation: 

Mcmullan, Julie, Crowe, Ashleen , Bailie, Caitlin , and McKnight, Amy Jayne. Evaluating the impact of COVID-19 on rare disease support groups. Ann Arbor, MI: Inter-university Consortium for Political and Social Research [distributor], 2020-11-26.

Project Description

Summary:  View help for Summary The impact of the current COVID-19 pandemic has been felt worldwide.  Many vulnerable populations rely heavily on peer support provided by individual or collaborative groups.  This project aimed to evaluate the impact of COVID-19 on groups supporting patients with a rare disease(s).  Anecdotally the current pandemic significantly changed the way in which these groups operate and the services they can provide.       A targeted survey was conducted online with rare disease individual or collaborative groups.  The results of the survey highlight the challenges individual and collaborative groups are facing during this pandemic and help to identify what support should be put in place to enable them to sustain their much-valued service through these trialing times.  Groups have experienced an increase in calls to their helplines as well as followers to their websites and social media feeds.  Groups are no longer meeting in person and so online meetings, webinars and zoom chats have become a regular occurrence.  Fundraising was highlighted as an area of concern for such groups.  It is hoped that this data might be used to highlight the support individual and collaborative groups require and raise awareness of the value they bring to many.
Funding Sources:  View help for Funding Sources Public Health Agency; Medical Research Council

Scope of Project

Subject Terms:  View help for Subject Terms Charity; Collaborative group; Covid-19; impact; online; qualitative; rare disease; survey
Geographic Coverage:  View help for Geographic Coverage Online
Time Period(s):  View help for Time Period(s) 3/2020 – 9/2020 (First stage of the pandemic)
Collection Date(s):  View help for Collection Date(s) 7/2020 – 9/2020 (Summer 2020)
Universe:  View help for Universe Those over 18 years old who are part of a collaborative group working in the area of rare disease.  
Data Type(s):  View help for Data Type(s) survey data


Response Rate:  View help for Response Rate Six rare disease individual or collaborative groups completed the online survey.  
Sampling:  View help for Sampling The survey was uploaded onto SmartSurvey (, and shared on the associated social media pages and websites of Northern Ireland Rare Disease Partnership (NIRDP, Health Research Charities Ireland (HRCI, and Rare Disease Ireland (RDI, as well as on the Queen’s University Belfast (QUB) rare disease website (  Rare disease collaborative groups who have been involved in research conducted by the Rare Disease Team at QUB previously, and provided consent, were emailed directly and invited to participate in this study.  
Collection Mode(s):  View help for Collection Mode(s) web-based survey
Unit(s) of Observation:  View help for Unit(s) of Observation Rare disease collaborative groups

Related Publications

Published Versions

Export Metadata

Report a Problem

Found a serious problem with the data, such as disclosure risk or copyrighted content? Let us know.

This material is distributed exactly as it arrived from the data depositor. ICPSR has not checked or processed this material. Users should consult the investigator(s) if further information is desired.