- In this section you will find links to a wide range of information relating to organisations, accessing current clinical trials, ILD guidelines, research articles and many others online resources relating to Interstitial Lung Disease (ILD).
We endeavour to ensure the accuracy of the information provided, however, if you do have concerns with any information on this site I would be grateful if you could let me know by using the Contact form and I can investigate further and update or amend if necessary. Otherwise, I hope you will find the information below useful. Thank you.
Table of contents:
- Organisations and groups
- Personal Independence Payment (PIP)
- Clinical trials – Currently recruiting
- Travel insurance
- IPF FAQs
- ILD Guideline and recommended diet and exercises
- Cost of Living Related Information
- 6MWT guidelines and documentation
- Telomerase research articles
- Breathing methods and techniques
- NHS Fitness Studio
- Improving Air Quality Initiatives
ERS International Congress Oct 2022
Idiopathic pulmonary fibrosis: an update of diagnosis and treatment recommendations
Pulmonary Fibrosis Foundation Summit November 2017
Organisations and groups
- https://www.blf.org.uk
- https://www.actionpf.org/
- https://pulmonaryfibrosistrust.org/
- https://euipff-foundation.squarespace.com/
- http://www.ersnet.org
- https://www.thoracic.org
- http://www.ilfa.ie
- https://www.rsm.ac.uk
- http://www.rcsi.ie/myhealthlectures
- https://www.nationaljewish.org/
- http://ild-inn.org.uk
- http://www.pulmonaryfibrosis.org/life-with-pf/support-groups/online-support-communities
- https://www.facebook.com/groups/55870688286/
- https://www.patientslikeme.com/
- https://www.inspire.com
- http://pulmonaryfibrosisnews.com/
- http://www.ipfcatalyst.com
Personal Independence Payment (PIP), & other financial and mobility assistance
Clinical trials & Research
- https://clinicaltrials.gov
- https://www.nhs.uk/conditions/clinical-trials/
- https://trials.eu-ipff.org
- REMAP-ILD: Randomised, embedded, multifactorial, adaptive platform trial for interstitial lung disease
- https://www.centerwatch.com/clinical-trials/
Travel insurance companies in the UK who cater to travellers with pre-existing medical conditions
- https://www.staysure.co.uk
- https://www.insureandgo.com
- https://www.fishinsurance.co.uk/products/travel-insurance/
- https://www.insurancewith.com
- http://www.able2travel.com
- https://www.freespirittravelinsurance.com
- https://www.blf.org.uk/our-insurance-partner
FAQs on Idiopathic Pulmonary Fibrosis (IPF)
- https://www.blf.org.uk/support-for-you/idiopathic-pulmonary-fibrosis-ipf
- https://www.rareconnect.org/en/community/idiopathic-pulmonary-fibrosis/faqs
- http://www.upmc.com/Services/pulmonology/interstitial-lung-disease/visit/Pages/faq.aspx
- http://www.ers-education.org/educational-material-on-idiopathic-pulmonary-fibrosis.aspx?platform=hootsuite
What is Idiopathic Pulmonary Fibrosis (IPF)?
(Source: HealthSketch)
Understanding Spirometry and Lung Function
(Source: Armando Hasudugan)
[http://erj.ersjournals.com/content/48/suppl_60/PA2425 – In patients with systemic sclerosis a ratio between Forced-Vital-Capacity (FVC) and diffusing capacity of carbon-monoxide (DLCO, FCV%/DLCO%) >1.5 could be a predictor of pulmonary hypertension (PH). The aim of this study was therefore to evaluate whether this index could be used in patients with PH, regardless of etiology.]
Related articles:
It is unclear how or if the ratio of FVC/DLCO can also be used as a reliable indicator for early diagnostics for Pulmonary Hypertension (PH) or for early indication of increased Pulmonary Arterial Pressure (PAP) in IPF patients.
So what does IPF sound like when recorded using a high quality stethoscope?
ILD Guideline and recommended diet and exercises
- Pulmonary Rehabilitation Class for Interstitial Lung Disease v4.0
- Eating well with a lung condition
- https://www.nice.org.uk/guidance/cg163
- http://www.erswhitebook.org/chapters/interstitial-lung-diseases/
- IPF Care Patient Support Program
Cost of Living Related Information
Government related information sites:
- Cost of Living Payment
- CAB: Get help with the cost of living
- Entitledto: Cost of living support
- Cost of Living Grants
- Turn2Us: Cost of Living Support – What cost of living support is available?
Smart shopping related articles:
- Cost of living: the best-before food websites giving households a lifeline
- 17 ways to cut the cost of your food bill
The 6 Minute Walking Test (6MWT) Guideline
Research articles concerning Telomerase, TERC, TERT, RTEL1, PF, IPF and FPF
- Heterozygous RTEL1 mutations are associated with familial pulmonary fibrosis (FPF)
- Telomere Length and Genetic Variant Associations with Interstitial Lung Disease Progression and Survival
- Syndromes of Telomere Shortening
- Senolytics in IPF: Results from a first-in-human, open-label, pilot study
- Telomerase Mutations in Families with Idiopathic Pulmonary Fibrosis
- Lung transplantation in telomerase mutation carriers with pulmonary fibrosis
- Adult-onset pulmonary fibrosis caused by mutations in telomerase
- The Efficacy of Pirfenidone in the Treatment of IPF: A Single-Institution Retrospective Study in Japan
- POINT: Should All Patients With IPF, Even Those With More Than Moderate Impairment, Be Treated With Nintedanib or Pirfenidone? Yes
- Pulmonary Fibrosis Flare-up Changes Patients’ Respiratory Bacteria Mix, Study Reports
- Promising emerging therapies for the treatment of IPF – 13 Nov 2015
- https://www.eurekalert.org/pub_releases/2017-08/hzm–cai080417.php
- https://www.eurekalert.org/pub_releases/2018-01/cndi-crc012918.php#.WnCUO3vfC0k.facebook
Breathing methods and techniques
- Active Cycle of Breathing Technique (ACBT) – Video guide
- The Active Cycle of Breathing Techniques – ACPRC text
- http://www.buteyko.com/method/index_method.html
- Buteyko Diary userguide
Guided relaxation to help with your breathing:
The following recording is a guided relaxing exercise to help control your breathing. Before playing the recording be in a relaxed and comfortable place and make sure that you will not be interrupted during the session.
NHS Fitness Studio
Improving Air Quality Initiatives
- http://www.wandsworth.gov.uk/news/article/13528/councils_unite_to_curb_delivery_pollution
- https://www.gov.uk/government/publications/air-quality-in-the-uk-plan-to-reduce-nitrogen-dioxide-emissions
- https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/486636/aq-plan-2015-overview-document.pdf
St Georges ILD Support Group 