NEED 2024 Call for proposals - Results

NEED PUZZLE compressed

Earlier this year, the NEED team launched two calls for proposals inviting patients, patient organisations, healthcare professionals and the general public to highlight health conditions for which there are patient and/or societal unmet health-related needs. One call for proposal was specific to Belgium, while the other one aimed to identify unmet needs in Europe.

Because it is not possible to evaluate the unmet needs of all health conditions received, two health conditions were selected for the next NEED case studies, via an evaluation and prioritisation procedure developed by the NEED team. The unmet needs of these two health conditions will then be identified following a scientifical methodology, and the results will be available in the NEED database.

Health conditions with potential unmet needs in Belgium

The Belgian call for proposals included a total of 348 submissions. We then:

  • Excluded of out-of-scope submissions, such as those focusing on very large groups of conditions (e.g. cancer), on symptoms (eg. muscle weakness and memory loss), or submissions with no diagnosis;
  • Merged closely related or overlapping conditions (e.g. hereditary myopathies and mitochondrial myopathies);
  • Added 19 health conditions identified through the Belgian Burden of Disease study.

We were left with a total of 118 unique health conditions with potential high unmet needs in Belgium visible in Table 1.

Following the application of the evaluation and prioritisation procedure developed by the NEED team, the two health conditions selected are:

  • Schizophrenia” as the non-rare health condition (case study start date: end of 2024)
  • Sickle cell disease” as the rare health condition (case study start date: end of 2025)

Furthermore, given that almost half of the submissions from the Belgian call for proposals were related to long COVID, we decided to include in the NEED database relevant results from the KCE report 344 (2021) on the needs of patients with long COVID.

Health conditions with potential unmet needs in Europe

A total of 42 submissions were sent in response to the European call for proposals. After excluding out-of-scope submissions (as explained above), 22 unique health conditions with potential high unmet needs were identified (Table 2). Among these, 13 coincide with the Belgian list of identified health conditions (Table 1).

 

Table 1 - List of the 118 health conditions identified through the Belgian call for proposals and the Belgian Burden of Disease study   Table 2 - List of the 22 health conditions identified through the European call for proposals
Achondroplasia    Angelman Syndrome
Acute disseminated encephalomyelitis    Cervical dysplasia
Adenomyosis    Chronic Fatigue Syndrome
Attention deficit hyperactivity disorder & attention-deficit disorder   Chronic kidney disease
Adrenocortical carcinoma    Unipolar depressive disorders
Alcohol use disorder    Dry eye disease
Alpha-1 Antitrypsin Deficiency    Ehlers Danlos syndrome
Alzheimer's & other dementias    Epilepsy 
Amyotrophic Lateral Sclerosis   Frozen Shoulder
Angelman syndrome    Huntington's Disease
Angina pectoris   Inflammatory bowel disease
Autism spectrum    Long COVID
Cerebral arterio-venous malformations   Menière's disease
Bipolar affective disorder    Nontuberculous mycobacterial pulmonary disease
Bladder cancer    Orthostatic intolerance
Brain cancer    Parkinson's disease
Cerebrovascular disease    Postural Orthostatic Tachycardia Syndrome
Charcot-Marie-Tooth disorder    Primary immunodeficiencies
Chronic fatigue syndrome    Progressive familial intrahepatic cholestasis
Chronic obstructive pulmonary disease    Ring chromosome 20 syndrome
Cluster headache    Spinal Muscular Atrophy
Coeliac disease    Stiff person syndrome
Complex regional pain syndrome     
Congenital anomalies     
Congenital hyperinsulinism     
Cricopharyngeal dysphagia/dystonia     
Cystic fibrosis     
Drug use disorders     
Dry eye syndrome     
Dyspraxia     
Ehlers Danlos syndrome     
Endometriosis     
Eosinophilic oesophagitis & eosinophilic gastrointestinal diseases     
Epidermolysis bullosa     
Epilepsy    
Fibromyalgia     
Fluoroquinolone-induced tendinopathy     
Food allergies (food protein-induced enterocolitis syndrome & paediatric food allergies)    
Fragile X syndrome     
Frozen shoulder     
Functional neurological disorders     
Gender incongruence of children/adolescents     
Gluten intolerance     
Gordon syndrome     
Grave's disease     
Guillan-Barre syndrome     
Hearing impairment     
Heart failure     
Hereditary & mitochondrial myopathies     
Hereditary multiple osteochondromas     
Hereditary spastic paraplegia     
Huntington's disease     
Hyperemesis gravidarum      
Hypophosphatasia     
Idiopathic mast cell activation syndrome     
Idiopathic progressive myopathies     
Idiopathic pulmonary fibrosis     
Primary immunodeficiencies    
Inflammatory polyarthritides     
Irritable bowel syndrome    
Ischaemic heart disease     
Lipoedema     
Long COVID    
Low back pain    
Lung Cancer     
Lyme's disease (with Bartonella)     
Ménière's disease     
Mycoplasma & chlamydia pneumoniae-induced disease    
Narcolepsy     
Neonatal encephalopathy     
Noninsulinoma pancreatogenous hypoglycemia syndrome    
Nontuberculous mycobacteria pulmonary disease    
Obsessive compulsive disorder     
Oesophageal atresia     
Optic neuritis/Devic's disease     
Osteoarthritis     
Osteoporosis    
Paediatric hypertension     
Paediatric kidney failure    
Paediatric primary chronic pain (juvenile fibromyalgia, chronic functional abdominal pain, complex regional pain syndrome)     
Parkinson's disease    
Perinatal depression     
Personality disorders     
Post-intensive care syndrome     
Post-sepsis syndrome     
Postural tachycardia syndrome    
Prader-Willi Syndrome     
Preterm birth complications     
Primary lymphedema     
Psoriasis     
Pudendal neuralgia     
Pulmonary fibrosis (silicosis)     
Pulmonary hypertension     
Pyruvate kinase deficiency     
Rheumatoid arthritis     
Ring chromosome 20 syndrome    
Scabies     
Schizophrenia     
Self-harm     
Sepsis and other infectious disorders of the newborn baby     
Sickle cell     
Sinusoidal obstruction syndrome / veno-occlusive disease     
Sjögren syndrome    
Small fiber peripheral neuropathy     
Subacute sclerosing panencephalitis    
Sudden infant death syndrome     
Susac syndrome     
Systemic autoinflammatory diseases (NLRP12)     
Systemic Lupus Erythematosus     
Systemic mastocytosis     
Tourette's syndrome    
Tinnitus     
Trachea, bronchus, and lung cancers     
Tuberous sclerosis     
Unipolar depressive disorders     
Urinary incontinence (post-prostate op)     
Venous ulcers     
Waisman syndrome     

About NEED

NEED is financially supported by the Belgian Federal Science Policy (BELSPO) through the INFRA-FED call.

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Project coordinators

dr. Irina Cleemput

KCE

irina.cleemput@kce.fgov.be

prof. dr. Robby De Pauw

Sciensano, Department of Epidemiology and Public Health, Service Health Information

robby.depauw@sciensano.be