Breaking News
November 16, 2018 - AHA: PTSD Common Among Those Who Suffer Tear in the Aorta’s Wall
November 16, 2018 - Many RA patients’ pain related to central nervous system
November 16, 2018 - Changes in Himalayan gut microbiomes linked to diet
November 16, 2018 - Inhibition of prostaglandin E2 enhances ability to combat infectious colitis
November 16, 2018 - Chronic dry eye can slow reading rate and disrupt day to day tasks
November 16, 2018 - Researchers develop new drug molecule that inhibits inflammation
November 16, 2018 - Dementia symptoms peak in winter and spring, study finds
November 16, 2018 - Stanford tobacco researcher weighs in on JUUL
November 16, 2018 - Increasing omega-3 fatty acid intake during pregnancy reduces risk of premature birth, review finds
November 16, 2018 - Researchers find no link between infants waking up at night and later developmental problems
November 16, 2018 - Both parents and children agree about confidential medical services
November 16, 2018 - FDA warns against use of unapproved pain medications with implanted pumps
November 16, 2018 - Precision medicine-based approach to slow or reverse biologic drivers of Alzheimer’s disease
November 16, 2018 - Study provides new insight into norovirus outbreaks, may help guide efforts to develop vaccines
November 16, 2018 - Inexpensive, portable air purifier could help protect the heart from pollution
November 16, 2018 - New 15-minute scan could help diagnose brain damage in babies up to two years old
November 16, 2018 - Deep brain stimulation not effective for treating early Alzheimer’s
November 16, 2018 - Traditional chemotherapy superior to new alternative for oropharyngeal cancers | News Center
November 16, 2018 - What This Pond Protist Does With Its Genome Will Astound You
November 15, 2018 - Researchers develop tool that speeds up analysis and publication of biomedical data
November 15, 2018 - Scientists identify mechanism used by lung cancer cells to obtain glucose
November 15, 2018 - Abnormalities in development of the brain could be involved in onset of autism, finds new study
November 15, 2018 - Soy protein equally effective as animal protein in building muscle strength
November 15, 2018 - American Academy of Pediatrics, Nov. 2-6
November 15, 2018 - Dopamine drives early addiction to heroin
November 15, 2018 - Variance in gut microbiome in Himalayan populations linked to dietary lifestyle | News Center
November 15, 2018 - Reducing Cardiovascular Disease: The Amish Way
November 15, 2018 - King’s researchers launch charter to guide organizations to engage abuse survivors in research
November 15, 2018 - Enable Injections enters into development agreements with UCB and Apellis Pharmaceuticals
November 15, 2018 - TGen North collaborates with NARBHA Institute to advance human health
November 15, 2018 - Researchers discover molecular basis for therapeutic actions of an African folk medicine
November 15, 2018 - Human Cell Atlas study of early pregnancy shows how mother’s immune system is modified
November 15, 2018 - New guidelines for detecting and managing sarcopenia to be launched in the UK
November 15, 2018 - Researchers explore role of dietary composition on energy expenditure
November 15, 2018 - Elsevier launches Entellect™ Platform, unlocking value by creating AI-ready life sciences data
November 15, 2018 - Now that cannabis is legal in Canada, let’s use it to tackle the opioid crisis
November 15, 2018 - In the Spotlight: At the intersection of tech, health, and ethics
November 15, 2018 - Traditional Glaucoma Test Can Miss Severity of the Disease
November 15, 2018 - Researchers directly connect activities of genes with instinctive behavior in male cichlids
November 15, 2018 - Salk researchers report new methods to identify AD drug candidates with anti-aging properties
November 15, 2018 - St. Jude Hospital announces availability of largest collections of leukemia samples
November 15, 2018 - Attenua Announces First Patient Treated in Phase 2 Clinical Trial in Chronic Cough with Bradanicline
November 15, 2018 - Designing a novel cell-permeable peptide chimera to promote wound healing
November 15, 2018 - NEI investigators combine two imaging modalities to view the retina in unprecedented detail
November 15, 2018 - Determining how hearts develop to better understand congenital heart defects
November 15, 2018 - Maverick immune cells can act independently to identify and kill cancer cells, finds research
November 15, 2018 - Advanced AI and big data methods to tackle dementia
November 15, 2018 - Report reveals increase in pancreatic cancer death rates across Europe
November 15, 2018 - Luxia Scientific announces availability of its gut microbiome test in Luxembourg
November 15, 2018 - New diabetes drugs linked to increased risk of lower-limb amputation and ketoacidosis
November 15, 2018 - New approach targets matrix surrounding neurons to protect neurons after stroke
November 15, 2018 - Lilly Submits New Drug Application to the FDA for Lasmiditan for Acute Treatment of Migraine
November 15, 2018 - Heart failure patients shouldn’t stop meds even if condition improves: study
November 15, 2018 - Parents and carers of people with diabetes experience emotional or mental health problems
November 15, 2018 - RetiPharma secures funding to develop new peptide drug for treating degenerative eye disorders
November 15, 2018 - Breakthrough research could lead to a new wave of cancer-fighting antibodies
November 15, 2018 - Mylan and Biocon launch new insulin glargine biosimilar in the UK
November 15, 2018 - For wildfire safety, only particular masks guard against toxic particulate matter
November 15, 2018 - New study of tribe shows influence of Western diet and lifestyle on blood pressure
November 15, 2018 - Scientists harness power of natural killer cells to treat children with neuroblastoma
November 15, 2018 - Investigating foodborne disease outbreak in Bosnia and Herzegovina based on simulation game
November 15, 2018 - Recommendations Issued for Management of Bradycardia
November 15, 2018 - Benefit unclear due to a lack of suitable studies
November 15, 2018 - TAMEST recognizes UT Southwestern’s Ralph DeBerardinis for changing our understanding of cancer
November 15, 2018 - Researchers discover key factors behind intestinal inflammation in CVID patients
November 15, 2018 - CityU develops first microarrayed 3D neuronal culture platform
November 15, 2018 - Expert suggests ways to control uncomfortable vaginal symptoms in diabetic women
November 15, 2018 - New edition of Red Journal focuses on roles of imaging in radiation oncology
November 15, 2018 - Doctors Aren’t Promoting Breastfeeding’s Cancer-Protection Benefit
November 15, 2018 - Collection of demonstration projects highlights value of patient engagement in research
November 15, 2018 - Technique to ‘listen’ to a patient’s brain during tumour surgery
November 15, 2018 - Seven-year-old returns to life as a “normal, healthy child” following bone marrow transplant
November 15, 2018 - AMSBIO expands range of high quality FFPE cancer cell line controls
November 15, 2018 - Marijuana use by kidney donors has no effect on transplant outcomes
November 15, 2018 - Exploring NMR Spectroscopy Applications through Interesting Infographics
November 15, 2018 - Chapman University wins additional $2.9 million NIH grant to study Alzheimer’s disease
November 15, 2018 - Microgel powder reduces infection and promotes healing
November 15, 2018 - Suicidal patients with prescribed access to psychotropic drugs should be closely monitored
November 15, 2018 - Nitric oxide-releasing technology shows potential to reduce healing time of diabetic foot ulcers
November 15, 2018 - Mass shootings may trigger unnecessary blood donations
Goethe University plays important role in rare disease research

Goethe University plays important role in rare disease research

image_pdfDownload PDFimage_print

Patients with rare diseases often go through a long history of suffering before finally receiving an accurate diagnosis. One reason for this is that the patient information necessary for research exists in varying languages and formats. This is set to change, thanks to a new European Joint Program in which Goethe University plays an important role.

For patients with rare diseases, the trek from doctor to doctor, and expert to expert, with a long paper trail of physician’s letters, test results, and images is practically a given. And when a diagnosis is finally made, they are faced with the difficulty of obtaining the correct therapy. To help these patients more quickly, valuable information regarding the course of the disease and its therapy, which is currently kept at individual healthcare institutions, must be made available for essential Europe-wide research.

The European Joint Program seeks to establish the technical and substantive requirements for clinical data to be used commonly for research purposes. Toward this end, Goethe University will receive the largest funding sum of all participating German institutions: more than one million euro over the coming five years.

In Frankfurt, the focus will be on developing tools to integrate and standardize patient data. This includes software solutions for setting up disease-specific patient registries in which specific patient data can be collected on an ongoing basis. This will result in a representative patient group whose data can be analyzed much more simply thanks to its standardization.

“I think we can say with pride that in the future, Frankfurt will have a central role in Europe regarding the patient registry of rare diseases,” says Professor T.O.F. Wagner from the Frankfurt Reference Centre of Rare Diseases. Together with Dr. Holger Storf, Head of the Medical Informatics Group, he developed an open source registration platform for rare disease. The modules in it were used, among other things, to set up the European Rare Disease Registry Infrastructure. They also constitute the basis for the approved work in Frankfurt which, together with Professor Gernot Rohde, Head of Pneumonology at the University Hospital, should contribute to an improved interoperability of registries.

“Rare diseases are a great example of a field of research that greatly profits from coordination at the European and international level, and which therefore requires technical support,” says Dr. Holger Storf. The new project should help overcome fragmentation and make cooperation easier.

Within the EU project, already existing tools and programs are to be consolidated and continued at a larger scale. Data from research, clinics, tests, processes, knowledge and know-how are to be shared throughout Europe in the future. In addition, an efficient model of financial support of all types of research on rare diseases – fundamental, clinical, health service – is to be introduced. The goal is an accelerated exploitation of research results in order to reduce the typical problems and ongoing suffering of patients.

Goethe University has already contributed to an improvement in the situation of patients with rare diseases through several different successful projects. In particular, the Mapping of Health Care Providers for People with Rare Diseases (www.se-atlas.de) deserves mention. It supports patients, their families, and health personnel in locating experts or patient organizations. The coordination and technical support of the European Reference Network for rare respiratory diseases (ERN-LUNG) is also in Frankfurt.

Source:

https://aktuelles.uni-frankfurt.de/englisch/goethe-university-intensifies-research-on-rare-diseases/

Tagged with:

About author

Related Articles