EHLERS-DANLOS SYNDROME (EDS) ADULT PROGRAM REFERRAL PACKAGE In order to request assessment for adults at the EDS Program at Toronto General Hospital, please complete the form below and append the requested documentation. Fax complete referral package to 416-340-3792. Due to a very high volume of referrals, only patients for whom a complete referral package is received will be triaged to determine if they are suitable to be seen in the EDS Program. We encourage you to work with your patient to complete the referral package. Please make special note of the items marked with an *, which are required accompanying documentation. Incomplete referral packages will not be triaged. Referring physician information: Specialty Physician billing number Mailing address Telephone Fax Email Patient information: OHIP number Mailing address Telephone EDS Program Referral Package 1/5
Reason for referral My patient has a: Suspected diagnosis of EDS Please indicate what makes you and your patient suspicious of the diagnosis: For patients with a suspected diagnosis of EDS, we require* the following information: An eye examination report from within the last 2 years, including retinal/slit-lamp exam An echocardiogram report from within the last 3 years Known diagnosis of EDS Please indicate why the patient is being referred to our program and their goals of the visit: For patients previously diagnosed with EDS, we require* the following information: Genetics consultation report stating the diagnosis of EDS (include genetic testing, if available) OR if the diagnosis was made by another physician, the detailed consultation report on how the diagnosis was made. An echocardiogram report from within the last 3 years For all patients, please provide the following, if available: Consultation reports from any pertinent specialists Recent laboratory tests, imaging (e.g. MRI) or other pertinent investigations (e.g. EMG) EDS Program Referral Package 2/5
Please complete the Beighton score as indicated below (required*): 2 ++ 1 1 2 3 4 + 5 /9 Please indicate if any of the following apply: Previous amputation (specify: ) Previous joint surgery (specify: ) Wheelchair-bound + and ++ indicate locations where skin hyperextensibility should be measured (see checklist on page 4) EDS Program Referral Package 3/5
Clinical checklist Please indicate ( ) if your patient has any of the following: Aneurysm or dissection of any vessel; specify which vessel(s): Spontaneous organ rupture e.g. colon, uterus, orbit/sclerae; specify which organ(s): Family history of sudden death at age <40 years Family history of EDS; provide details: Skin hyperextensibility/abnormally stretchy skin; skin measurements required* if checked: Pinch and lift the cutaneous and subcutaneous skin layers of the skin at 1) volar surface at the middle of non-dominant forearm (see + on diagram on page 3): cm 2) dorsum of hand (see ++ on diagram on page 3): cm 3) elbow: cm Atrophic scars; specify site(s): Joint dislocations (joint out of socket requiring manual reduction, e.g. in ER); specify which joints, # of occurrences and activity at time of dislocation: Joint subluxations; specify which joints: Recurrent hernias or organ prolapse, e.g. bladder, bowel, uterus; specify organ(s): Joint pain Widespread pain Arm span ( cm) to height ( cm) ratio (measurements in cm required* if checked) Dysautonomia (e.g. recurrent syncope, postural orthostatic tachycardia syndrome) Irritable bowel syndrome Anxiety, depression or other psychiatric diagnosis (specify: ) Lens dislocation/detachment Retinal detachment Blue sclerae Spontaneous pneumothorax Scoliosis Hearing loss; specify type (conductive/sensorineural/mixed), side(s) affected and age of onset: Recurrent fractures with minimal or no trauma Congenital malformation (e.g. cleft lip/palate, structural cardiac defect, club foot); provide details: Early developmental delays or learning difficulties Autism spectrum disorder EDS Program Referral Package 4/5
Family physician or specialist who will provide ongoing care *Patient must have a family physician or specialist prepared to be an active participant in his/her care and provide follow-up. Please have this physician complete and sign the following (required*). To whom it may concern: Your patient has been referred to the Ehlers-Danlos Syndrome Program at University Health Network, either by you or another health care practitioner. One of our referral criteria is that a physician (either family physician or specialist) play an active role in the treatment of their patients. We will provide assessment and management recommendations for your patient. In some cases, management and referrals may be initiated by our Program. However, after initial consultation, the patient will be returned to you for ongoing care. If in agreement, please sign this form, which will be included in the referral package. We will proceed with triaging the referral upon receipt of a complete referral package. Signature Print Fax Number Date (mm/dd/yy) Please fax the complete referral package (pages 1-5) to 416-340-3792. EDS Program Referral Package 5/5